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the card was delightful ..
I hope you gave it to yourself also ;-] ..... that mother in law is a piece
of work .... you have the patience of Job ....
blessings
sheila

John, Patricia is an incredible person and I suspect you are, too.
My mother Joyce died at 71 of what we believe was SND. For her it was
speedy -- she was diagnosed with PD 2/97, rediagnosed with SND 9/98 and she
died 11/00 -- both others live much longer. She died ofr complications
(aspirated fluids while in the hospital for bowel impaction). She was
wheelchair bound and was only able to speak with slurred speech,
eat--though she was beginning to have problems swallowing--and use her right
hand in a very limited way. She was all there mentally and was, in fact,
very, very funny and upbeat. She held court with her friends, who were there
everyday, bringing meals in, etc.
The day before she died, she had her hair done at a hairdressers and went
shopping. She was the most crippled person I had ever seen. I loved her with
every inch of myself.
I hope Patricia has enjoyment from life and you, too. Debbie

Whenever they did an brain MRI of my mother Joyce (71, died 11/00), she
always called with the same result: There is nothing there. It was a family
joke. Debbie

Hi
I have been reading mail here for quite some time but haven't posted
before, mainly due to lack of time.
My name is John Cummings and I live in Melbourne, Australia. I am 60
and an early retiree from the IT world in order to care for my soon to
be 63 year old wife who has MSA. I do not profess to be an expert but
I have searched the Internet fairly exhaustively over the past three
to four years.
My wife was diagnosed in 1994 with PD having had the symptoms for a
couple of years before that. Her Neurologist was suspicious from the
start because her reflexes were too good for someone with PD and
eventually, after referrals and MRI scans, the diagnosis was changed
to MSA. My wife has seen four Neurologists and none of them will
place their hands on their heart and say it is definitely MSA and they
all say that I won't know for sure until autopsy.
My wife has willed her brain to the local brain bank.
I believe she has MSA and I also believe that she has SND. She is
quite advanced - can not walk, is wheelchair bound, has a PEG, will
soon have a supra pubic catheter, has great difficulty swallowing, has
all her medication and a third of her food administered via the PEG,
the remainder of her food is taken orally and is vitamised to a honey
consistency. All drinks are thickened to a honey consistency. She
has regular choking episodes as a result of mucus slipping down into
her windpipe. Her speech is rapidly deteriorating and she now uses a
lightwriter. She can not write at all. She communicates with her
friends via email using one finger on her left hand (she is right
handed, or was!). Mentally she is as alert and sharp as she ever was.
For those interested, her daily intake of medication is:
1000mg Sinemet-M or Kinson-M (levodopa+carbidopa) 100mg/25mg -10
tablets
1mg Cabaser (cabergoline) 1 x 1mg tablet
5mg Parlodel (bromocriptine) - 2 x 2½ mg tablets
1.25mg Paxam or Rivotril (clonazepam) - 3 tablets
200mg Zoloft (sertraline) - 2 x 100mg tablets
40mg Prepulsid Forte (Cisapride - as monohydrate) - 2 x 20mg tablets
24mg Bisolvon (bromhexine hydrochloride) 3 x 8mg tablets
500iu Vitamin 'E' 1 capsule
Epsom Salts I flat teaspoon
En-zy-mex 2 tablets
One of the Neurologists believes that our three sons have a 50/50
chance of contracting the illness and I have no reason to doubt him.
My wife's father was diagnosed with PD in his late 60's but died as a
result of a heart attack (not connected with the PD - he also had
emphysema) about two years after his PD diagnosis. As my wife's
condition deteriorates, we can both see strong similarities with her
father. It is a pity we didn't ask for an autopsy then - I suspect he
had MSA or something similar. Going back in my wife's family history,
there are a number of recorded accounts of ancestors having tremors.
But they lived in the country and did not have access to the city
doctors, and of course, they generally didn't live as long in those
days.
Regarding the prognosis for MSA. I don't see any harm in the
statement that it is in the region of 7-12 years. Many Neurologists
do believe that but like all illnesses there will be exceptions to the
rule. Some will die sooner, and some will live longer. Take for
example the renowned British scientist Stephen Hawking who has MND.
He is way past his "use by date" and is still going strong. At the
rate my wife is deteriorating, she will need nothing short of a
miracle to live past the 12 year mark. I also feel that anyone who
lives way past 12 years probably doesn't have MSA but has something
similar.
Finally, for those of you who are ill and for those who are Carers, I
will share with you a letter that my wife wrote about 18 months ago in
which she wrote about her coming to terms with what she jokingly calls
her "Palsy". For me, it is one of the most beautiful things I have
ever read. I only wish that I had her faith and courage and that I
was as accepting of her condition as she is. I share it with you in
the hope that it might help someone out there who is grappling to come
to terms with what is the most challenging thing ever in their lives.
I have my wife's (Patricia) permission to share this letter.
Regards
John Cummings
My Shaking Palsy An attempt at understanding
by Patricia Cummings
Brilliant Thoughts
We all must die. That is how things are. The next generations have to
have their turn, and we have to prepare for them and then make way for
them. The Creator Spirit, who sustains all life, and indeed everything
that exists, has decreed it thus. As the psalmist says:
You sweep them away, they are like a dream,
Like grass that is renewed in the morning;
In the morning it flourishes and is renewed;
In the evening it fades and withers.
Ps 90
Although I am not thrilled to be one of those who "fades and withers"
of the Palsy at my age, I have in my possession the death certificates
of most of my grandmothers, and I feel I have no right to cry "why
me?". I am no more special than my maternal greatgreat-great
grandmother Mary Malloy who died at 55 or her daughter Jane Elizabeth
who died at 56. Neither am I more special than my paterenal Irish
great-grandmother Johanna Maher who died at 42, or my father's mother
who died at 62. Admittedly my Shepheard great- grandmother lived to 90
and my Spinks great-grandmother until 96 and my own maternal
grandmother to 83.
And even though I am fading and withering prematurely, I have had a
very good life. I was born to parents who loved me and gave me the
best start in life that they could including a first-rate education
and my Catholic faith. I have enjoyed the love of a good man and am
the mother of three fine sons. I have also been blessed with two
grand-daughters and have acquired potentially two more grand-daughters
and a grandson through my sons' relationships. I have never been to
Rio nor have I seen the Eiffel Tower, but I have seen and heard
President Sukarno, and I have seen the Angkor Wat temple complex in
Cambodia, the Borobodur temple in Indonesia and Chichen Itza in
Yukutan, Mexico. I have also kissed the Blarney Stone. .
I accepted, with a reasonable degree of equanimity and some sadness,
my father's diagnosis of the palsy. Things like that just happened to
old people. I do not mean I am being punished but that I do not have
the right to expect special treatment. The doctor treating my father
said, when he died, "You should be happy that Paddy was spared the
Parkinson's which is a disgusting and degrading condition". "Thank
you, God", I dutifully said. But what do I say now?
On Tuesday, along with my husband, I saw my neurologist who looked at
me with kindly professional interest. He replied to a question I
cannot remember asking that he could only guess how long before I had
completely lost mobility, and my husband would have to consider a
heavier type of total care for me but thought six months a reasonable
figure. He also thought I might have had a couple of slight strokes
because he could detect an incease in my facial asymmetry. Last
Sunday, at the suggestion of my good friend Judy, Father John Flynn
gave me a special healing blessing and annointing.
So what do I make of all of this? There is a very moving prayer by the
late Jesuit writer, Pierre Teilhard de Chardin, called the "When"
prayer. It puts the physical and mental disintegration of ageing and
death in a positive light, and seems to be the completion of the
lovely Psalm 139.
" You hem me in, behind and before
and lay your hand upon me "
"For it was you who formed my inward parts;
You knit me together in my mother's wombfor I am fearfully
And wonderfully made"
Teilhard believed that all creation is evolving by working towards the
"Omega Point" which is Christ. We are naturally essential to this
process because we are the highest form of life that has evolved . We
are to be creative and to resist evil whether moral or physical evil
on a large scale or in our daily lives. We are indeed to "divinize"
our lives offering to God, both our "activities" and our
"passivities". The passivities are more or less our given qualities,
good and bad, our circumstances in life, our physical and mental
health, intelligence, the things that happen to us. By being offered
to God, with the wine at Mass (which Teilhard says represents our
"passivities", with the bread representing our "activities") and
therefore linked to Christ's sufferings, they are given value. They
can be offered for others our loved ones and all who need our
prayers. It is possible to see an answer to a situation like having
the Palsy.
Teilhard addresses God in his "When" Prayer saying that when the signs
of disintegration and diminishment appear in his body or mind he
should remember that it is God who is:
"parting the fibres of my being
in order to penetrate
to the very marrow of my substance
and bear me away within yourself".
So the Creator Spirit who knit me together in my mother's womb is
unravelling his handwork and in Resurrection will re-make me.
*************************************

Fred is also one that has the freezing in step. It seem to be
happening more & more, but another thing that he has been doing more
of lately is trying to run in step also. I have to pull him back , so
that he wont fall. He saw the Neuro last week, and he said that the
MSA has progress alot this last year. Fred started taking the pro-
amatine, but only the day before he went to the doctor and stopped
the day after. I've gotten him to start them again, because his b/p
has been dropping to 111/60 sitting and 80/52 standing. He is also
getting very weak later in the afternoon. The doctor didn't make any
changes with the meds, he said he didn't think that it would make any
different.I don't know if that is good new or bad.
Always Vera

Ok! so how are you guys reading the card? I've tried and I can't do
it, but then I guess that doesn't suprise you. See what I do when I
have sometime on my hands. I look at all the greeting pages to see
what cards they have. I know it's silly,but Heather was gone and had
the baby with her and Fred was asleep .So I looked and looked and
looked. I had a good time and that's what counts right? I came across
the one that I sent to you guys and it made me laugh, so I hoped that
it would do the same thing for you.
Sorry I haven't been putting my 2 cents in lately, but only been
getting on to read a few things real fast and sometimes Aol has been
making it even faster if you know what I mean. Nothing like getting
online just to get kicked off again.
I'm still trying to get things worked out with the company on the
w/c. Did get the w/c company to stop the collections company on the
payment until I can appeal it. Then the leak in the Van is fixed I
think. I had all the new seal's put in it, but it still had a leak.
Along with trying to get both of these things fixed, Fred's mother
called and wanted me to look for this birthday doll that hallmark
sells that she couldn't fine up her way and asked when I didn't have
anything else to do if I would call around here to fine it. Right Mom
when I have nothing else to do I'll call around. Which I did In
between everything else.I lucked out, the first place I called didn't
have them ,but knew where I could get them. So I called there, and
they had the one I needed. I called Fred mother and tolded her I had
it. Well she never get's down here, but wanted to come down the next
day to get it. I had plan to go to my brother's that day, but Fred
wanted to see his mother, so I called my brother and tolded him it
would be the next day that I would be over. Fred asked his mother is
she wanted to meet at this cafe that she likes down here but she said
no that she would come to our house. Anyway the next day it was
raining and the van still had a leak, so I put a plastic bag over the
part of the van that leaked so it wouldn't get any water in it. This
wasn't enough for Fred ,he wanted me to put a tarp over it, so there
I am in the cold rain putting the tarp over it, getting it all
straped down, when he came out to tell me ,not to straped it down to
much because his mother just called and wants to meet us at the cafe.
By now I'm cold , wet and have to take all the stuff off the Van to
meet her in an hour at the cafe. I still have to get Fred ready,
Hannah ready and myself out of the wet clothes and drive 20 minutes
to get there. Ok! I won't say what I was thinking, but I bet you can
guess. Anyway I get us all ready , drive the 20 minutes, wait for
another hour there, when I get a call at the cafe, they won't be
there. Ok! now you really know what I am thinking. So after all of
that I have to go home take the baby in , Fred in and you got it, put
all the stuff back on the Van, so it won't leak and then his mother
calls later and said that she will be coming .Now she will come to
the house. You got that right! This is the mother that is always
telling Fred he is getting to fat. When she comes in she has his
birthday gift with her. One lemon cake , 2 carrot cakes, 1 chocolate
pie and a bag full of popcorn balls. Yeah! fat, I wonder why. She
looked at the birthday doll and tells me it's not the right one, but
that she'll take it. Then she let's her dog in the back to do his
little walk and then she leaves. Didn't even ask how Fred was
doing.The next day she called and tolded me it was the right
doll.Fred tolded her next time we'll meet at the crub. So that is why
I sent the card.Time seem to be really short around here lately.
Oh! life is beautiful.
Vera

Hi

I lost all my email last week, but I remember someone wanted information about New Zealand. This is a good site. If I can help more please write again. We lived there for 3 years before coming to Australia. Love Anne

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Thanks, Bernice! It's so funny...20/20 just had a
report on diagnosing Alzheimer's with PET scans. They
explained how they work. It was quite interesting.
Melanie in OK
--- Bernice Bowers <bernice.bowers@...

We're not questioning his dx. He has now seen two
Movement Disorder Specialists, one at Mayo and one in
Houston. They both are in total agreement that all of
his symptoms point to MSA. I just think it's so
strange that they don't know for sure until an autopsy
is performed.
Thanks for the info on how an MRI works. My son had
one recently because he was having serious dizzy
spells. I was too worried to ask how they worked.
Melanie in OK

Click here: Sabbatini, R.M.E.: The PET Scan: A New Window Into the Brain

Mary, What you describe is freezing. A lot of people find it beneficial to
place something in front of them (a book, say), to get themselves going
again. Debbie

Click here: basic MR imaging This site tells the difference between
different kinds of brain scanning and shows examples.
Barbara Smith

Donna,
You may want to get him to a urologist, He should be putting out urine
more than that. Is he drinking a lot of water? He needs to so he can
avoid UTI, Been there and done that trip(no fun).
Al's output during the night it between 1500 and 2000 cc in an 7-8 hrs
period. Depending on the amount of fluid he had taken.
Ann from Soddy,TN

MRIs don't show anything. They are done to rule out other causes. PET scans
are the ones that show Parkinson's changes and probably also MSA changes, but
they are very expensive and hard to get insurance companies to pay for.
Barbara Smith

I keep meaning to ask if anyone knows whether or not
there is any connection between a brain injury and the
development of MSA.
My father suffered a serious head injury almost twenty
years ago as the result of an auto accident. He had a
severe skull fracture and severe concussion. He spent
12 days in the hospital. When he was dx with PD, the
Drs. thought it was possibly brought on by this
injury. I wonder if it could have caused his MSA?
Melanie in OK

I know what you mean about it being strange that the
MRIs are normal. In fact, all of my father's
"standard" medical tests come back normal...blood
work, MRIs, etc. When he started having the terrible
back pain (which we now know is caused by the spasms),
he had a complete MRI of his spine. The Dr. said he
had the spine of a 40 year old! His brain looks
"normal", too. He just told me today that he's had
three MRIs of his brian in the past two years, with
the latest being in January of this year. There is no
change. I just don't understand...
Melanie in OK

Becky,
Try this site for good descriptions of w/c's. It is best to get an occupational
therapist (durder doctor's orders) to fit you for the chair as there are about a
dozen things they fit you for.
Take care, Bill and Charlotte
===========================================

John has heavy legs and lots of frezzing spells. I use to be able to touch
the back of his foot and it would help him move but now he really has a hard
time making them move. Talking about the connection between the head and
feet......... I think John's is broken !!!!!!!!!!! (LOL)
John has had an MRI and c-scan in 4/2000 and another c-scan this month. They
said all of them were normal.....go figure...
How can someone have so much wrong with them and get a normal
indications???????
I know that these test mainly rule out other things like tumors and other
biggies and we are very greatful that he doesn't have any of the biggies but
looks like some of this other stuff would show up.
Donna of Abilene

Doug,
Something got messed up there. I meant to say that only sporatic OPCA was
considered MSA. Probably a cut and paste error. Moral - don't try to hurry!
Feeling somewhat better.
Take care, Bill and Charlotte

I know Drs. say that MSA isn't inherited, but I want
to mention something that we noticed in my family.
My father had a brother who had severe epilepsy as a
result of a brain injury at birth. For his entire life
(75 years), he was on strong medications to (somewhat)
control his seizures. He was never able to work,
drive, etc., and lived with my grandmother until the
time of his death.
In his 75th year, he suddenly became very ill with
pneumonia. He was hospitalized for two weeks when he
finally improved suddenly. The night before he was to
be released, he just died in his sleep (sleep apnea?).
No autopsy was performed, so we don't know the exact
cause of death.
When my dad was dx with PD, and later MSA, we began
thinking about my uncle and the problems he had from
the time he was in his late 50s and were struck by how
similar they were to things my father struggles with
now. He very stooped posture, balance problems, loud
snoring, progressive speech difficulties (severe
slurring, stuttering, softness of voice, etc.),
swallowing difficulties, the "shuffle walk" and so on.
As the years went by, all of these symptoms
progressed. He became less stable on his feet, having
lots of falls. He became much more stubborn every
year, too. The Drs. and my dad's family assumed that
all of his problems were caused by years of
medication. Maybe they were. It just seems to be a
little too coincidental given Daddy's dx now. I
suppose we'll never know, but thought it was worth
mentioning.

dscapretti wrote :
"It's not just that we're laymen trying to understand the esotheric
language of a highly technical profession. Clearly the professionals
themselves are struggling with the terminology too."
thank you for that. Since I came here from the PSP group, I have been
struggling trying hard to get the gist of exactly what this disease is and
what it is called. There seems to be so much teminology that I don't
understand. Seemed on the psp list we just spoke mostly of PSP, but the
alphabet soup on this list has me baffled.
the post mortem showed my husband had MSA which I understood was a blanket
term for the 3 types you all often mention.
Dr. Dickson from Mayo in Jacksonville FL wrote on Ken's pathology report
"The findings are typical of multiple system atrophy (MSA), which was
formerly known as Shy- Drager Syndrom. Particularly noteworthy in this case
is the presence of many glial cytoplasmic inclusions (GCI), which have
become recognized as the histopathological hallmark of this condition. There
were also a few neuronal inclusions that were positive for synuclein. This
case illustrates the usefulness of immunostaining with "-synuclein in
demonstrating the widespread distribution of GCI, even in areas, such as the
motor cortex with only subtle pathology on routine stains. The fundamental
abnormality in MSA is unknown, but morphological and biochemical alterations
in synuclein strongly implicate this protein in the disease process.
MSA is the most common misdiagnosis for clinically consistent progressive
supranuclear palsy (PSP) in the Society for PSP Brain Bank."
He summed it up with:
NEUROPATHOLOGY DIAGNOSIS;
1. MULTIPLE SYSTEM ATROPHY (STRIATONIGRAL & OLIVOPONTOCEREBELLAR
DEGENERATION)
2. SENILE CHANGES OF THE ALZHEIMER TYPE, MINIMAL. (BRAAK STAGE ll)
There are four pages in all of the report, but these are the ones that meant
the most to me.
What confused me, is after I got on this list, I understood that Shy-drager
involved the blood pressure problem, which Ken did not have. And then Dr.
Dickson said MSA was formerly called shy-drager. So I am still confused as
to how they broke these down, but if the doctors themselves are confused, I
guess there is hope for me yet.
Bernice / cg to Ken dec. 06-23-00

Doug,
I think one of the issues I am seeing in postings on this
issue is that there could be some likelihood that MSA
patients who can identify a relative with PD, or OPCA,
or MSA may not have an accurate diagnosis on their MSA.
There is a recurring point in most of what I've read which
asserts that the only true confirmation of the MSA diagnosis
is made at post-mortem.
Jerry Cash

I have also read that Lou Gherig's disease affects the peripheral
nerves, not the brain itself so that generally the brain remains
healthy but becomes isolated from the rest of the body.
--
Doug in Greenbelt, MD USA

Bill,
Hope you're feeling better. I think you may still be a bit groggy
though.

OPCA may be hereditary OR sporadic. Sporadic means non-hereditary.
Only sporadic, that is, non-hereditary OPCA is associated with MSA.
Pam posted a paper that concluded that only about one quarter of
Sporadic OPCA develops into MSA. The other, 3/4s of the cases
evidently have some other underlying cause. That caught my eye,
because some of those other underlying causes might be treatable.
Or I suppose there may be more yet unidentified hereditary ataxias,
or known hereditary ataxias misdiagnosed as sporadic.
About two years ago, before the list was on egroups, a fellow posted
(I think about having attended a conference) and he mentioned in
passing that he and his identical twin brother both had MSA. I asked
him if he and his brother had been in touch with researchers and
he wrote back to the list and said yes.
I never heard anything more.
Obviously he and his brother were not a part of the study you
mention, or the Vandebilt study of 400 patients that found no
second cases within their families.
Doug in Greeneblt MD USA

I want to thank everyone for their responses to my questions about the Mayo
Clinic and about Dr. Low. I am so glad that I have an appointment with such a
specialist in this field. it makes me feel a little less apprehensive about the
whole deal. I would love to read the work that Dr. Low has written if anyone can
steer me to them, I would appreciate it.
As for the heavy legs, I also feel them at times. It is like I am wearing a suit
of armor. My father, whom I am his caregiver, suffers from final stage
Parkinson's, has the freezing. This is when his feet just stick to the floor and
he can not move them. If I come up behind him and nudge his heel with my toe, it
will initiate his foot to move. This really works well, but is tough on my shoes
at times. Dad is wheelchair bound, or lets say should be. He can not walk at all
without falling but insists on trying to walk around the house anyways. Remember
the chats and postings on stubborness. My father wrote the book on stubborness.
About the issue of inheriting a neurological disease like MSA. OK my paternal
grandfather had parkinson's, my father has parkinson's and I have possible MSA,
but they say maybe the kind that affects my cerebellum. I do think there is a
link there. I show very few parkinson's symptoms. The doctor says none at all,
but after living with my Dad I know that some of the things he suffers from, I
also have them. But in a mild form, thanks heaven. I have noticed that my Dad
shows signs of autonomic dysfunctions. I wonder if they happen in the very late
stages of Parkinson's I believe that I read somewhere that they do but can't
remember. Can anyone shed light on this for me.
Again thanks for the information about Mayo and Dr. Low. I am very anxious to go
and finally get answers to my questions and hopefully a positive diagnosis.
Meg

I am trying to arrange my time so I can drive down to Louisville for the
walk from Columbus. If there is anyone in the area who would like a ride
with me, I would be more than happy to get together with them. Even if you
are in a wheelchair. I can push you on the walk.
Bernice

My husband Ken suffered a lot from freezing. I used to walk behind him when
he was walking with the walker, and when his foot would freeze I would slide
my toe under his heel and help him move his foot forward. Often he could go
up on his toe, but no farther.
Bernice

Melanie,
The MRI's were an attempt to decide if she had OPCA. If only the lobs of the
cerebellum were atrophied, then they would have leaned more toward OPCA. But in
Charlotte's case the whole brain showed some atrophy. The MRI's do more to rule
out things than to definitely identify MSA.
Take care, Bill and Charlotte

Hi Debbie: What does "heavy legs" mean? Bob has the feeling that his
foot is stuck to the floor and then he has to wait until it unsticks in
order to take another step with the walker. Do you think that is the
same thing? Thanks.regards,jerrie

In a message dated 3/15/01 9:47:35 AM Eastern Standard Time, Jerry@...
writes:
<< Wouldn't that mean
that only sporadic forms of OPCA progress to MSA (if
one accepts that MSA is non-hereditary)?
this is the way i understand it jerry and even
at that, it isn't ALL sporadic OPCA that progresses
to MSA.
as for testing.....i'd think long and hard about that.
and i did. and decided against it. the one thing
that nagged me about that was that if my daughter
or son had tested positive....and were so young....'
the fear then increases as to whether or not any
health insurance company would cover them.
of course, if you can keep the results confidential....
but i don't think that's the case. besides i cannot
help but believe that a treatment or cure will be
found in near future. hopefully your brother will
benefit. i do feel he should remain as active and
independent for as long as he can. even healthy
people will "lose it" if they don't "use it".
regards
kaye

Interesting, Al 's sister had Lou Gherig disease, which is a
neurological disorder(I think), it is the nerve from the brain that tells
the muscles what to do??
His grandfather had (they think, since he shook all of the time)
Parkinson.
Have cousins on the same side with neurological disorders, can't get a
name for all of them but have been digging.
Ann from Soddy,TN

Al only uses the catheter at night, during the day we use depends, most
of the time he is able to get to the john alright, but then there are
days that he can't make it.
His output during the night (7 1/2 to 8hr) is 2000 and sometimes more.
That is why we were getting up every hour all night.
Ann from Soddy,TN

Earl, My mother Joyce (71, dx PD 2/97, MSA 9/98, died 11/00) said she had
heavy legs sometimes. Also, her head was always heavy. She didn't have any
pain (thank goodness). Others on the list have -- and in the area you
describe. I'm not sure whether it's a progression of the disease, but they
are certainly symptoms someone with the disease can experience. Debbie

My wife Iris is having a great bit of trouble lifting her legs while
trying to walk. She sorta shuffles her self along, but I am afraind
she will fall. Also very bad pain at base of neck in back and lots
of back pain. Can someone advise me if this is the progressing of MSA.
She has pain medication for pain, but does not like to be doped up.
Thanks
Earl

I see that your wife had a couple of MRIs. Did they
show anything that indicates MSA? My father said that
Dr. Ahlskog said that his MRI didn't show what he
usually sees on MRIs of patients with MSA. I don't
know what that means. Can you actually see the
degeneration of certain parts of the brain?
Melanie in OK

Jerry,
Yes it does follow and is accepted that only sporatic OPCA is considered
hereditary. I read Doug's posting and don't remember any twins both having MSA,
in fact someone did a study on identical twins and none of the sets had more
than one twin with MSA. We do get unconfirmed reports of people having MSA and
if you don't follow up with a movement disorder specialist, there is an
excellent chance you may have been misdiagnosed. Even with a movement disorder
specialist, there is a chance you will be misdiagnosed as all of these brain
disorders have much the same symptoms. The only certain diagnoses is an
autopsy.
You want to concentrate on finding a doctor that will work with the patient and
the caregiver to find the most relief from the symptoms. If you can extend life
and quality of life, they may find a cure in time for the patient.
My wife's most predominate symptom is the balance problem, which indicates OPCA,
but she started with the toe drop of PD as well as the microwriting which
accompanies PD (as well as othr disorders). She also has OH (BP drop on
standing), so she has a little of all three forms of MSA. Charlotte has had
symptoms since 1987-88, was diagnosed as PD in 1990 and saw a noted movement
disorder specialist, who said it could be OPCA about 1994. n 1995, she was seen
at NIH and they decided after noting all her records (including two MRI's a year
apart) that their opinion was MSA.
As far as the next generation, let's concentrate our energy on getting Congress
to push all research which could lead to a cure for all the brain disorders.
The idea of putting more money into AIDS and Cancer research, while banning the
most promising research for Parkinson's is NOT in the Nation's best interest.
That could even help many of the people on this list presently.
If you are extremely concerned, have the DNA tests run for known ataxias, that
will tell you about known genetic problems at least. Patients should also
consided an autopsy as a benefit to their heirs as well, in case they later
discover another bad gene or cure.
Take care, Bill and Charlotte

Jim,
This paper prompts me to ask...Which came first, the
chicken or the egg? So many of the sypmtoms noted here
my father has had for years (poor sleep, urination
problems, balance problems, generalized itching,
flu-like symptoms, etc.) Are these caused by POTS or
MSA?
I'm really confused now. :-)
Melanie in OK

<HR
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Patient's Report</TITLE
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<P ALIGN=Center
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Tachycardia
Syndrome</BIG
<P ALIGN=Center
<FONT COLOR="#004080"
report on causes, symptoms,
and treatment</BIG
<P ALIGN=Left
<FONT COLOR="#004080"
patient's report on POTS
and related issues. &nbsp;Patients should seek
<A
HREF="http://www.ndrf.org/physicia.htm"
medical help</A
and only use the contents of this page as general
background information
representing a layman's condensation of the latest
research and
theories.</SMALL
<P ALIGN=Left
<FONT COLOR="#000080"
2001</B
</B
a
<A
HREF="http://www.clipper.net/~calder/utility2.html"
Experiment
for Doctors</I
difficulties patients
with chronic orthostatic intolerance syndromes face
every day.</SMALL
<P
<P ALIGN=Left
<HR
<P
&nbsp;<BIG
COLOR="#ff0000"
extremely rapid heart rate, usually signified by a
pulse rate of over 100
beats per minute (bpm). &nbsp;<FONT
COLOR="#ff0000"
tachycardia syndrome (POTS) </FONT
defined as a
<FONT COLOR="Black"
more from the supine
(laying down) to the standing position within ten
minutes or less.
&nbsp;Patients with florid POT</FONT
tachycardia over 120
bpm within 5 minutes or less. &nbsp;Some patients
experience supine tachycardia
which is usually transient in nature and often
accompanied by sleep disturbances.
&nbsp;Studies show that about 75% of POTS patients are
women and that a genetic
tendency to develop POTS is usually transferred from
mother to daughter.
&nbsp;</BIG
<P
<BIG
correct diagnosis of
POTS there must be an absence of any other known cause
of tachycardia such
as a specific heart </FONT
usually accompanied by
frequent spells of neurally mediated hypotension (NMH)
but this is not always
the case. &nbsp;NMH means '<U
standing</U
by a defect in the function of the autonomic nervous
system. &nbsp;A minority
of patients exhibit no measurable lowering of blood
pressure during tilt
table testing. &nbsp;Some patients may even experience
an increase in standing
blood pressure&nbsp;due to an abnormal
overcompensation of the autonomic
nervous system to the orthostatic stress of the
upright position.</BIG
<P
<BIG
metabolically active organ
in the body and requires a steady supply of oxygen and
glucose to maintain
healthy function. &nbsp;Although the brain represents
only 1-2% of the body's
mass, it utilizes 20% of the body's oxygen consumption
and 15% of cardiac
output. &nbsp;Our brains are thus highly dependent on
adequate blood circulation
to maintain our sense of health and well being.
&nbsp;The thought process,
regulation of body temperature, hormone release, the
sweating reflex, and
many autonomic systems can be impaired by loss of
proper blood pressure control.
&nbsp;Our survival is as dependent on adequate blood
pressure regulation
as on the fundamental process of
breathing.&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;</BIG
<P
<BIG
<A
HREF="http://www.clipper.net/~calder/utility10.html"
study by
UCLA</A
much better than men.
&nbsp;Thus the claim by some uninformed doctors that
POTS is caused by "stress"
rather than an underlying physical disease process is
not based on good science.
&nbsp;If stress caused POTS then men would develop
POTS much more often than
women, the exact opposite of what accepted statistics
indicates is the case.
&nbsp;Men have a stronger adrenaline 'fight or flight'
reaction to stress
than women and are less prone to work out problems
with friends and family.
&nbsp;Researchers found that women have higher levels
of a hormone called
oxytocin. &nbsp;"<U
levels of oxytocin are calmer,
more relaxed, more social and less anxious. &nbsp;In
several animal species,
oxytocin leads to maternal behavior and to
affiliation</U
<P
<BIG
&nbsp;</BIG
HREF="http://www.clipper.net/~calder/utility11.html"
fatigue syndrome (CFS)</A
fatigue immune dysfunction
syndrome (CFIDS), is somewhat related to POTS, at
least in terms of a similarity
of many of the secondary symptoms. &nbsp;In Europe,
CFS
</BIG
(ME).
<FONT COLOR="Black"
<A
HREF="http://www.mc.vanderbilt.edu/gcrc/adc/oi.html"
University</A
</FONT
<FONT COLOR="Black"
abnormalities mentioned
in this paper, known together as </FONT
COLOR="#ff0000"
intolerance</FONT
some of the symptoms
of CFS. &nbsp;It is estimated that between 500,000 and
800,000 Americans
have CFS and over 100,000 Americans have
POTS.</FONT
<P
<FONT COLOR="#004080"
</BIG
&nbsp;The answer to
that question can be answered with a pie chart showing
multiple causes, not
by any one line statement. &nbsp;Postural intolerance
has been likened to
a fever in that it is a symptom which can have many
diverse root causes,
both central and peripheral. &nbsp;Although gaps in
our medical knowledge
remain, most of the main causes for the development of
POTS have been identified
and are listed below as general categories.</BIG
<P
<BIG
damage the autonomic nervous
system. &nbsp;Patients who develop POTS due to an
infection, with no deeper
underlying genetic cause, have the best prognosis for
a spontaneous recovery
over time.</BIG
<P
<BIG
the autonomic nervous
system. &nbsp;This group includes adverse reactions to
prescription drugs.
&nbsp;Many Gulf War veterans have developed POTS like
symptoms after being
forced by military leaders to take inadequately tested
experimental
drugs.</BIG
<P
<BIG
disorders, including
disorders of catecholamine production and
release.</BIG
<P
<BIG
damage due to rapid
weight loss, diabetes, and alcoholism. &nbsp;Doctors
at the Mayo Clinic have
identified
<A
HREF="http://www.nejm.org/content/2000/0343/0012/0847.asp"
specific for nicotinic acetylcholine receptors in the
autonomic ganglia
</A
approximately 10% of all
POTS cases.</BIG
University believe that
some cases are caused by a
<A
HREF="http://www.nejm.org/content/2000/0343/0014/1008.asp"
sympathetic
denervation</A
<P
<BIG
spinal cord through
accidents of all kinds, with automobile accidents
being the most commonly
reported cause.</BIG
documented cases of patients
developing neurally mediated hypotension after
undergoing radiation treatment
to the neck.</BIG
<P
<BIG
abnormalities such as cervical
spinal stenosis and hindbrain case compression (the
root cause of Chiari
I malformation). &nbsp;<A
HREF="http://www.myelitis.org/"
myelitis</A
cord, is a proven
cause of <A
HREF="http://www.aafp.org/afp/971001ap/engstrm.html"
hypotension</A
understand how inflammation
and/or compression of the spinal cord caused by
cervical spinal stenosis
could cause neurally mediated hypotension and chronic
fatigue.
&nbsp;Obtaining</BIG
<A
HREF="http://www.clipper.net/~calder/utility6.html"
study of the brain
and cervical spine (neck)</A
diagnostic procedure for any
patient diagnosed with POTS or CFS. </BIG
<P
<BIG
of Shy-Drager
Syndrome.</BIG
<P
<BIG
causes, both genetic and
acquired, that <U
to breast implant
surgery techniques to connective tissue disorders
(<A
HREF="http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=10518084&amp;form=\
6&amp;db=m&amp;Dopt=b"
syndrome</A
excessively.
&nbsp;Essentially anything that can damage the brain
stem and important autonomic
nervous system structures can cause POTS. &nbsp;One
<A
HREF="http://www.immunesupport.com/articles/imm48.cfm"
study</A
found that hypertension of the left renal (kidney)
vein, a condition nicknamed
the nutcracker phenomenon, can be a cause of
orthostatic tachycardia and
chronic fatigue in children.</BIG
<P
<BIG
<P
<FONT COLOR="Black"
theories</BIG
is suspected that
POTS can be caused by denervation of alpha receptors,
damage to lower thoracic
and lumbar sympathetic neurons, damage to
baroreceptors, and damage to the
vagus nerve. &nbsp;<FONT COLOR="Black"
Mayo Clinic has shown
that some of the most severely affected patients have
</FONT
dysregulation</FONT
</FONT
utilizing brain positron emission tomography (PET
scans) have shown that
people with CFS and neurally mediated hypotension have
a marked reduction
of blood flow to their brain stems and this may apply
to some POTS patients
as well. &nbsp;The brain stem is located where the
brain and the spinal column
meet and it regulates blood pressure, blood volume,
and many other autonomic
functions.</BIG
<P
<BIG
(hypovolemia) is considered a major
factor in many cases of POTS, NMH, and CFS. <FONT
COLOR="#ff0000"
patients have a greater than 30% reduction in blood
volume, which is equal
to the amount of blood loss one would experience in a
major automobile
accident.</FONT
adrenergic system
(bodys neurological and hormonal system that helps
govern heart rate)
is a prime cause of POTS in some patients.
&nbsp;Mitral valve prolapse (failure
of the heart valves to fully close) can be a
contributing agent.</BIG
<P
<BIG
anecdotal reports of patients
developing POTS after contracting Lyme Disease, but I
have not yet seen a
medical study on this possible connection.</BIG
<BIG
of Johns Hopkins has found evidence linking
<A
HREF="http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=10518084&amp;form=\
6&amp;db=m&amp;Dopt=b"
syndrome</A
&nbsp;<A
HREF="http://members.home.net/fdsupport/index.html"
Dysplasia</A
HREF="http://members.aol.com/fdsupport/index.html"
</A
stenosis and skull
malformations, has been reported to be associated with
an extraordinarily
high incidence of the development of POTS.</BIG
<P
<BIG
&nbsp;Genetics</FONT
a big role in determining who gets POTS and NMH.
&nbsp;In addition to inheriting
a spinal/cranial problem it is also possible to
inherit an overly sensitive
beta adrenergic system which can be a direct cause of
tachycardia. &nbsp;Some
patients are born lacking an enzyme needed to produce
the vasoconstricting
hormone norepinephrine. &nbsp;A lack of sufficient
vasoconstriction can cause
tachycardia as a indirect protective response to blood
pooling in the legs
and abdomen (low venous return). &nbsp;Researchers at
Vanderbilt
University&nbsp;claim to have discovered a
<A
HREF="http://www.nejm.org/content/2000/0342/0008/0541.asp"
genetic
flaw that disrupts the effectiveness of
norepinephrine</A
chronic orthostatic intolerance. </BIG
<P
<FONT
COLOR="Black"
A
1997 study by Dr. Michael J. Rosner suggested that
narrowing of the spinal
canal in the neck, called <FONT
COLOR="#ff0000"
stenosis</FONT
CFS and fibromyalgia.
&nbsp;The word 'stenosis' means the narrowing of a
tube. &nbsp;This narrowing
of the neural passageway is sometimes associated with
Chiari I malformation,
a herniation of the cerebellar tonsils into the spinal
canal.</BIG
<P
<BIG
<A
HREF="http://www.clipper.net/~calder/utility.html"
Michael Rosner</A
<A
HREF="http://abcnews.go.com/sections/living/DrJohnson/drjohnson_3.html"
Daniel Heffez</A
<BIG
HREF="http://members.tripod.co.uk/chiari2000/milhorat-english.htm"
Thomas Milhorat</A
spinal/cranial abnormalities
in some POTS patients. &nbsp;An ever growing number of
POTS patients have
had MRI studies which reveal Chiari I malformations
and/or cervical spinal
stenosis. &nbsp;Corrective surgery has been performed
on a substantial number
of these patients with positive results. &nbsp;This
new discovery linking
POTS, CFS, and fibromyalgia to spinal cord compression
and cranial abnormalities
may prove to be of Rosetta Stone significance.</BIG
<P
<FONT
COLOR="Black"
<BIG
malformation can cause
postural intolerance and standing tachycardia.
&nbsp;Doctors use to believe
that Chiari was the result of an abnormal brain
formation. &nbsp;Experts
now realize that Chiari is caused by a hypoplastic
posterior cranial fossa
which can be due to an underdeveloped
<A
HREF="http://www.csuchico.edu/anth/Module/occipital.html"
bone</A
"hypoplastic" indicates
an abnormally small sized cranial cavity.
</BIG
the lower skull did not grow large enough to provide
adequate space for the
brain, thus inducing a downward herniation of the
brain into the spinal canal
(the Chiari herniation). </BIG
overcrowding of the lower
skull also produces an upward shift of the cerebellar
tentorium.
&nbsp;A&nbsp;<FONT COLOR="#ff0000"
</FONT
important sign of an undersized cranial fossa
(<A
HREF="http://www.vh.org/Providers/Textbooks/BrainAnatomy/Ch2Text/Section06.html"\
of brain</A
<P
<BIG
cavity which holds the
cerebellum with the cerebellar tonsils at the bottom,
just above the spinal
column. &nbsp;If the lower (posterior) fossa is
inadequately developed, the
cerebellar tonsils are pushed out of the base of the
skull and into the spinal
canal. &nbsp;The root cause of this Chiari herniation
is sometimes called
<FONT COLOR="#ff0000"
compression</FONT
COLOR="Black"
vessels, interfere with normal neural transmission,
and
<FONT COLOR="Black"
(CSF) flow</FONT
congenitally narrow spinal canal may occur with a
hypoplastic posterior fossa
or can develop independently. &nbsp;A number of
respected researchers believe
that either or both of these abnormalities may be
responsible for the symptoms
of <U
fibromyalgia.</BIG
<P
<BIG
suggest that the degree
of cerebellar tonsillar herniation does not correlate
well with the severity
of symptoms. &nbsp;They believe that disability cannot
be prejudged by the
number of millimeters of herniation of the cerebellar
tonsils below the foramen
magnum (the foramen magnum is the large hole at the
base of the skull which
allows passage of the spinal cord). &nbsp;Other
factors, such as a congenitally
narrow spinal canal, are believed to amplify symptoms
of cerebellar tonsils
herniation. &nbsp;One doctor is said to have explained
this phenomena as
"packing too much into a briefcase".</BIG
&nbsp;<BIG
is believed to cause neurally mediated hypotension and
POTS by blunting
sympathetic outflow, the vital regulatory
communication between brain and
body.</BIG
<P
<BIG
malformation has been diagnosed
when the cerebellar tonsils were herniated by 5mm or
more below the foramen
magnum or from 3-5 mm if there is evidence of
cervicomedullary kinking,
elongation of the 4th ventricle, or syringomyelia.
&nbsp;Dr. Rosner and several
other specialists have found that even smaller degrees
of herniation can
cause problems through nerve tissue compression and
disruption of CSF flow.
&nbsp;The new understanding is that hindbrain case
compression is the root
cause of illness, not just the herniation of the
cerebellar tonsils which
is a symptom of that compression.
&nbsp;</BIG
not accept this belief
and larger studies, including long term surgical
outcome studies, are needed
to prove this theory as fact. </BIG
<P
<FONT COLOR="#ff0000"
potential rewards of treatment
worth the risks, discomfort, and expense of
surgery?&nbsp; Does the current
lack of integration of diagnostic techniques make an
informed decision too
difficult to consider surgery</U
<P
&nbsp; &nbsp; &nbsp;<BIG
fluid (CSF) may be key
to understanding the cause of <U
chronic fatigue syndrome
and POTS. &nbsp;CSF helps physically support the brain
and spinal cord. &nbsp;It
removes chemical waste products from the brain and
thus acts as a buffer
to control the chemical environment of the central
nervous system.
&nbsp;CSF&nbsp;is nutritive for neurons and glial
cells and maintains the
constancy of the ionic composition of the local
microenvironment of the cells
of the nervous system. &nbsp;As CSF also carries many
hormones and
neurotransmitters, the disruption of CSF flow could
easily cause the fatigue
and "brain fog" so many CFS sufferers experience.
&nbsp;Even the pH of CSF
may effect such strategic functions as pulmonary
ventilation and cerebral
blood flow. </BIG
<P
<BIG
imaging (MRI) findings
for affected patients are a reduction of the
retrocerebellar cerebrospinal
fluid spaces, varying degrees of cranial base
dysplasia, and an up to 40%
reduction of cerebrospinal fluid volume.
&nbsp;Cerebellar tonsillar herniation
of less than 3 mm does not exclude the diagnosis of
hindbrain case compression.
&nbsp;A number of <FONT COLOR="Black"
surgeons now believe that
you can have an undersized posterior cranial fossa and
an&nbsp;abnormally
compressed brain stem without any herniation of the
cerebellar tonsils into
the spinal canal (no Chiari I malformation at all).
</FONT
can be helpful in demonstrating a disturbance of CSF
velocity/flow at the
foramen magnum in patients without cerebellar
tonsillar herniation. </BIG
<P
&nbsp; <BIG
average age of onset
of symptoms for Chiari related disorders is 25.
&nbsp;Some patients develop
symptoms spontaneously while other patients become
symptomatic after an
infectious illness or a neck injury such as whiplash.
&nbsp;Compression of
the brain stem and lower cranial nerves are a likely
cause of tachycardia
and neurally mediated hypotension in patients with
hindbrain case compression.
(see links section #3, also please read editorial near
bottom of page - Here
is a <A
HREF="http://www.chiaripaper.cjb.net/"
famous Chiari
neurosurgeons plus links.)</BIG
<P
<FONT COLOR="Black"
theory</BIG
</BIG
speculated that some patients
with CFS suffer from chronic infections of Epstein-Bar
virus (EBV) and/or
human herpes virus 6 (HHV-6). </BIG
COLOR="Black"
Cheney, a famous long time CFS researcher, believes
that CFS patients experience
a reactivation of common herpesviruses but this
reactivation is a secondary
by-product of a dysfunctional immune system, not a
primary cause of the disorder
itself. &nbsp;The herpesviruses seem to act as
opportunistic infectious agents
which play some role in the gradual destructive
process of MS, AIDS, and
other diseases that damage the autonomic nervous
system.</BIG
<P
<BIG
in some cases of POTS
and CFS the autonomic nervous system is damaged first
by infection,
spinal/cranial abnormalities, or chemical exposure.
&nbsp;This leads to a
dysregulation of the neuro-immune system which allows
opportunistic reactivated
viral infections to simmer in the body, making the
patient even weaker.</BIG
&nbsp;<FONT COLOR="Black"
believe that almost any severe
viral infection can cause a temporary form of POTS,
which usually resolves
itself over time. &nbsp;</BIG
<P
&nbsp; &nbsp;
<FONT
COLOR="Black"
Dr. William
F. Baumzweiger suggests brain stem
encephalitis/encephalopathy might be a
link between CFS, POTS, and Gulf War Syndrome (GWS).
&nbsp;Encephalitis means
an inflammation of the brain and encephalopathy
denotes a degeneration of
brain matter. &nbsp;Many veterans with GWS experience
standing tachycardia,
neurally mediated hypotension, body pains and fatigue.
&nbsp;Dr. Baumzweiger
summarizes a disruption of three basic mechanisms seen
in Gulf War Syndrome;
a calcium channel disorder, a disorder of CNS
lymphocyte development, and
a problem with reactivation of latent
retroviruses.</BIG
<P
<BIG
professor of radiology
at the University of Texas Southwestern Medical Center
in Dallas, has used
magnetic resonance spectroscopy to measure the
chemical composition of the
brain stems of Gulf War veterans. &nbsp;These scans
reveal that veterans
who have GWS have reduced levels of a chemical,
N-acetyl-aspartate, which
is created by living brain cells and which is reduced
in quantity when brain
cells die. &nbsp;This evidence suggests a loss of
neurons in the critical
areas of the brain that regulates blood pressure,
heart rate, and other autonomic
functions. &nbsp;It is interesting to question
if&nbsp;hindbrain case compression
and reduced cerebral spinal fluid flow could also
cause brain stem
encephalitis/encephalopathy and the death of strategic
neurons in the brain
stem. &nbsp;The possible link between GWS and POTS is
highly provocative
and deserves further study. (see links section
#5)</BIG
<P
<BIG
surgery often develop
POTS or CFS and there is an interesting new theory
that might explain this.
&nbsp;Dr. Michael J. Rosner suggests that during
breast implant surgery the
neck is often hyperextended backwards while the
patient is under general
anesthesia. &nbsp;When the neck is hyperextended
backwards the cervical spinal
canal narrows which puts direct pressure on the brain
stem. &nbsp;This abnormal
pressure may cause neurological damage which could
degrade the autonomic
nervous system's main regulatory functions. &nbsp;The
toxic effects of anesthesia
may also be an important factor in amplifying this
theorized destructive
process. </BIG
<P
<BIG
develop POTS after bearing
children. &nbsp;One possible explanation for this
phenomena is that the
tremendous straining women must initiate to expel the
child puts an abnormal
amount of pressure on the brain stem. &nbsp;Straining
at stool is known to
be dangerous for Chiari patients and an aggravator of
autonomic nervous system
symptoms. &nbsp;It is theorized that even greater
pressures could build up
during the birthing process causing brain stem damage
and the development
of dysautonomia syndromes. &nbsp;It has been suggested
that women who have
a slightly undersized (tight) fossa and/or an
abnormally narrow cervical
spinal canal may be more prone to such injuries even
if they have no Chiari
1 malformation and are not candidates for fossa
decompression surgery.
&nbsp;While these new theories are unproven they are
credible enough to deserve
careful study by medical researchers.&nbsp;</BIG
<P
<BIG
markers</U
both Vanderbilt and the Mayo Clinic confirms that most
people with POTS have
<FONT COLOR="#ff0000"
&nbsp;Renin is a
protein-digesting enzyme that is released by the
kidneys and acts to raise
blood pressure by activating angiotensin, a powerful
vasoconstricting hormone.
&nbsp;This finding suggests a general breakdown of the
autonomic nervous
system which regulates the body's basic physical
systems automatically.
&nbsp;The end result of this dysregulation is less
blood and oxygen getting
to the brain (</BIG
hypoxia).&nbsp;</BIG
<P
<BIG
&nbsp;Australian and British researchers
have independently confirmed that the muscles of CFS
patients produce twice
the normal amount of </FONT
COLOR="#ff0000"
</FONT
</FONT
HREF="http://www.clipper.net/~calder/lactic.html"
acid </A
glucose (sugar) in the
absence of sufficient oxygen. &nbsp;CFS patients are
unable to metabolize
glucose effectively thus causing a kind of glucose
intolerance. &nbsp;Their
muscles turn glucose into lactic acid which poisons
the system, thus causing
extreme fatigue and weakness. &nbsp;Additional
research has also found high
lactic acid levels within the cerebral spinal fluid of
CFS patients as
well.</BIG
<P
<BIG
COLOR="#000080"
COLOR="#800000"
COLOR="Black"
30 bpm acceleration of heart rate from the supine to
the standing position
within 10 minutes or less, with a peak heart rate
reaching at least 120 bpm.<B
</B
go all the way up to
150 bpm and beyond. &nbsp;During tilt table testing
some POTS patients have
large drops in blood pressure and pass out (syncope)
while other patients
have only relatively shallow drops in blood pressure.
&nbsp;<FONT COLOR="Black"
patients have no drop
in blood pressure at all.</FONT
<P
<BIG
&nbsp;POTS is diagnosed on
the basis of heart rate increase and heart waveform
signature revealed by
electrocardiogram, not on the basis of a drop in blood
pressure as is the
case with orthostatic hypotension and neurally
mediated hypotension (NMH).
&nbsp;<A
HREF="http://www.med.jhu.edu/peds/cfs.html"
mediated
hypotension</A
having NMH is not a
prerequisite for a diagnosis of POTS.</BIG
&nbsp;<BIG
of POTS vary significantly from case to case.
&nbsp;The most commonly reported
symptoms are listed below. &nbsp; &nbsp;</BIG
<P
<BIG
patients can comfortably
stand varies widely from case to case. &nbsp;Patients
may become
<FONT COLOR="#ff0000"
COLOR="#ff0000"
and develop <FONT COLOR="#ff0000"
pain</FONT
beyond their limit. &nbsp;Blood pooling in the legs
and splanchnic bed (abdomen)
may occur and can be felt in the same way you feel
water filling up your
mouth. &nbsp;<FONT COLOR="#ff0000"
breath, blurry vision,
tingling</FONT
COLOR="#ff0000"
of heat from increased adrenaline production are
common symptoms of orthostatic
stress. </BIG
frequently</BIG
is dangerous as well as uncomfortable. &nbsp;Many
patients experience spells
of supine or standing <FONT COLOR="#ff0000"
</FONT
is dependent on the root cause of the POTS.
&nbsp;Remember that POTS itself
in not a specific disease like polio, but rather a
symptom and a syndrome
(a collection of symptoms).</BIG
<P
&nbsp; &nbsp;<BIG
is that the heart
pain associated with POTS is predominately
non-ischemic, but further research
may alter this perception. &nbsp;It is believed the
left sided heart pain
so common among POTS sufferers is due to differences
in heart chamber pressures,
abnormal heart wall motions, and/or nerve damage.
&nbsp;It is not related
to common angina which is usually caused by blocked
arteries cutting off
the supply of blood to the heart. &nbsp;While
uncomfortable and debilitating,
this left sided heart pain is not believed to be
immediately life threatening.
&nbsp;On occasion, patients may also have the strange
sensation that their
lungs are filled with glue. &nbsp;This uncomfortable
feeling is usually
misinterpreted as being evidence of a lung infection
while in most cases
it is a cardiovascular
symptom.&nbsp;&nbsp;&nbsp;</BIG
<P
<BIG
POTS and NMH you become
lightheaded&nbsp;and weak even before you get a
measured crash in blood pressure
because the small blood vessels in the brain
paradoxically constrict when
you are under orthostatic stress. </FONT
cerebral
vasoconstriction&nbsp;cuts off the blood supply to
brain cells while veins
in the legs and splanchnic bed are dilated and pooling
blood away from your
heart. With inadequate filling of the heart's left
ventricle and abnormal
function of the alpha and beta adrenergic systems, it
is no wonder that strange
and irregular heart beats (palpitations) are a
universal symptom of POTS.&nbsp;
These are often referred to as <FONT
COLOR="#ff0000"
</FONT
common aberration
reported.&nbsp;</BIG
<P
<BIG
temporary rise in blood
pressure immediately upon standing due to the rapid
acceleration of heart
rate. <FONT COLOR="Black"
the bodys defense
mechanism against a lack of sufficient venous blood
returned to the heart.
&nbsp;Blood vessels, particularly <FONT
COLOR="#ff0000"
become unnaturally dilated causing blood pooling in
the legs and splanchnic
bed (abdomen). &nbsp;Thus the heart must beat more
times in a minute to make
up for the reduced blood volume transferred by each
beat. &nbsp;If a POTS
patient stands up too suddenly there may be so little
blood in the heart
that it may collapse upon itself causing very painful
heartbeats. &nbsp;Patients
often have measurably <FONT COLOR="#ff0000"
standing pulse pressure
</FONT
pooling.</BIG
<P
<BIG
COLOR="#ff0000"
is a common symptom of POTS, NMH, and severe cases of
CFS. &nbsp;This
problem&nbsp;is sometimes misdiagnosed as diabetes
insipidus, which is a
disease caused by reduced production of a pituitary
hormone called
vasopressin.&nbsp;&nbsp;Some POTS patients develop a
diabetes insipidus like
syndrome which is believed to be caused by somewhat
reduced vasopressin output,
low blood volume, and disruption of the alpha
adrenergic system which helps
the kidneys retain water and sodium.</BIG
<P
<BIG
COLOR="#ff0000"
(hypoglycemia) is a common symptom of both POTS and
CFS and occurs through
a complex series of neural and hormonal interactions
which are not yet fully
understood. &nbsp;Researchers have discovered that
people with orthostatic
hypotension (low standing blood pressure) often get a
drop in blood pressure
right after eating carbohydrate rich foods. &nbsp;This
may be caused by a
direct vasodilation effect (increase in internal size
of blood vessels) of
suddenly higher blood glucose levels. &nbsp;The
traditional definition of
hypoglycemia is an abnormal lowering of blood sugar
levels after the body
overreacts to carbohydrates with excessive insulin
production.
</BIG
blood sugar levels is
not the only cause of symptoms. &nbsp;Recent studies
suggest glucose aggravated
aberrations of serotonin, dopamine, noradrenaline, and
<A
HREF="http://www.clipper.net/~calder/lactic.html"
acid levels</A
may be associated with glucose intolerance (also
called "reactive
hypoglycemia").&nbsp;</BIG
<P
<BIG
<FONT COLOR="#ff0000"
COLOR="Black"
may result from a number of factors, including
abnormally high adrenaline
levels caused by increased orthostatic stress (the
stress of standing).
&nbsp;</FONT
</FONT
problem for people with POTS and may be due to damage
to the medulla which
controls important cardiac and respiratory functions.
&nbsp;Chiari I malformation
is a&nbsp;proven cause of sleep apnea. &nbsp;At least
one top neurosurgeon
believes that cervical spinal stenosis can also be a
cause: reporting that
almost all of his cervical spinal stenosis patients
have it.&nbsp;
<FONT COLOR="Black"
HREF="http://members.aol.com/blackcover/csa.html"
sleep apnea</A
stop while sleeping.
&nbsp;</BIG
<P
<BIG
disruptions in&nbsp;the
body's circadian rhythms may add to difficulty in
getting a good night's
sleep. &nbsp;Circadian rhythms&nbsp;are the regular
24-hour cycles by which
the body adjusts itself from daytime to night-time
activity. &nbsp;A recent
study of 18 CFS patient's found that their 24-hour
systolic blood pressure
rhythms had an amplitude 2.8 times greater than a
normal control group.
&nbsp;The CFS patient's 24-hour diastolic blood
pressure rhythms had an amplitude
of 9.0 times that of the normal subjects.
&nbsp;Night-time systolic blood
pressures readings were consistently below 100 mm Hg
in the CFS patients.
&nbsp;POTS patients were not included in this study so
further research is
needed to see if night-time supine hypotension is a
problem for them as
well.</BIG
<P
<BIG
grade fevers, mild chills,
and general flu like symptoms </FONT
POTS. &nbsp;This may
be explained by a neurologically based loss of control
of basic autonomic
regulatory systems, an overactive immune system, or
&nbsp;abnormally high
adrenaline levels effecting body heat production.
&nbsp;Many patients have
<FONT COLOR="#ff0000"
tests (ANA test)</FONT
which some doctors say is due to high adrenaline
levels activating the immune
system. &nbsp;Other doctors suggest positive ANA tests
may be due to an
anti-immune disorder damaging nerve cells.
&nbsp;Patients are left in confusion
as to which theory to believe.</BIG
<P
<BIG
fatigue and
weakness</FONT
sufferers. &nbsp;Those who have
pure POTS without CFS or significant immune system
involvement generally
feel better and have greater postural tolerance
despite tachycardia.&nbsp;
Many POTS patients have common pollen allergies,
<FONT COLOR="#ff0000"
allergies</FONT
drug sensitive </BIG
<P
<BIG
intestines are a frequent
complaint. &nbsp;The nausea can usually be eliminated
by not stressing yourself
beyond your capabilities. &nbsp;Bloating is caused by
low motility in the
intestines, a byproduct of nerve damage.
&nbsp;Patients often develop
<A
HREF="http://www.clipper.net/~calder/utility12.html"
bowel syndrome
</A
tender.
<FONT COLOR="#ff0000"
</FONT
HREF="http://www.mcw.edu/gastro/dys.htm"
- pronounced
dis-FAY-jee-uh) is also a frequently reported
problem.</BIG
<P
<BIG
COLOR="#ff0000"
soles</FONT
arms, and hands are
often totally numb upon awakening from sleep.
&nbsp;Upper extremity somatosensory
evoked potential studies are usually normal in POTS
and CFS patients but
this is not always the case. &nbsp;Unusual coldness of
the hands is also
common and is referred to as <FONT
COLOR="#ff0000"
&nbsp;Patients frequently experience sporadic
itchiness, burning and tingling
sensations all over the body, especially at
night.</BIG
may also have <FONT COLOR="#ff0000"
reduced sweating</FONT
which can be tested for through a thermoregulatory
sweat test.&nbsp;</BIG
<P
<BIG
COLOR="#ff0000"
balance</FONT
who have cervical spinal
stenosis and/or hindbrain case compression.
&nbsp;Patients are often unable
to pass a drunk test by walking with one foot placed
directly in front of
the other. &nbsp;An <FONT COLOR="#ff0000"
gait </FONT
&nbsp;Patients may walk with legs wide apart and feet
flared out to the sides
as an instinctive adaptive response to increase their
stability.
&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; </BIG
<P
<BIG
common problem as is a
feeling of pressure behind the eyes. &nbsp;Patients
can become so weak that
their eye muscles are easily strained and focusing is
difficult. &nbsp;Many
POTS and CFS patients see tiny little black dots
floating in front of their
eyes.&nbsp; This is a problem of the fluid in the eyes
which occurs naturally
with age, but which can be made dramatically worse
by&nbsp;the onset of CFS
or POTS. &nbsp;</BIG
<P
<BIG
readings are usually normal
or below normal in POTS patients. &nbsp;This is in
sharp contrast to multiple
system atrophy (Shy-Drager syndrome), idiopathic
orthostatic hypotension
(Bradbury-Eggleston syndrome), and other forms of
central autonomic failure
typified by low standing blood pressure and high
supine blood
pressure.&nbsp;&nbsp;Lack of supine hypertension (high
blood pressure when
laying down) is usually a sign you do not suffer from
the classic forms of
central autonomic failure.</BIG
<P
<BIG
have a few of the
symptoms listed here, while others will have unique
symptoms all their own.
&nbsp;A <FONT COLOR="#ff0000"
major symptom of POTS
and many patients will have a difficult time just
remembering their own symptoms
while conversing with doctors. &nbsp;The total damage
to the autonomic nervous
system POTS sufferers experience, called
<FONT COLOR="#ff0000"
Dr. David Robertson
of Vanderbilt University refers to as mild autonomic
abnormalities.
&nbsp;These symptoms, such as frequent urination and
glucose intolerance,
are not life threatening but they are quality of life
destroying.</BIG
<P
<BIG
problems with low blood pressure
have a difficult time understanding the concept of
<FONT COLOR="Black"
HREF="http://www.clipper.net/~calder/utility2.html"
stress</A
blood pressure is as basic
and essential a bodily function as breathing.
&nbsp;How would you feel if
your breathing were constricted for even one minute?
&nbsp;Low blood pressure
can cause an enormous amount of symptoms and
suffering, but those who dont
have it often miss that fundamental point. &nbsp;Some
patients with POTS
have such a damaged regulatory system that they may
get paradoxical wild
swings in blood pressure from below 50 to over
200</BIG
<BIG
pressure problem
combined.</BIG
<P
<FONT COLOR="#004080"
</BIG
with POTS and neurally
mediated hypotension is often very difficult.
&nbsp;When you stand up your
body should automatically constrict blood vessels to
help maintain blood
pressure in the face of increased orthostatic stress.
&nbsp;In the standing
position gravity wants to pull your blood down to your
feet. &nbsp;When you
lie down your body should automatically dilate blood
vessels as gravity is
no longer a force to fight against. &nbsp;With POTS
this automatic regulatory
system breaks down and blood begins to pool in places
where it should be
flowing rapidly. &nbsp;The heart is then stressed with
the added work of
trying to pull all that blood uphill without help from
the much needed alpha
adrenergic constriction process.</BIG
<P
<BIG
impossible to replace
the bodys dynamic, constantly changing system for
controlling blood
pressure with something as static and fixed as a
simple dose of
chemicals.</FONT
not work well for
a significant number of patients.</BIG
others, drugs work
well enough to greatly increase comfort and
functionality.</BIG
<P
<BIG
&nbsp;Adding extra
<FONT COLOR="#ff0000"
increases blood volume and
blood pressure by increasing fluid retention.
&nbsp;People suffering from
POTS and neurally mediated hypotension often have
measurably reduced blood
volume. &nbsp;One must increase fluid intake for salt
to expand blood volume
and this usually occurs spontaneously as salt
increases thirst. &nbsp;Increasing
salt intake is often the safest first method to try
and can improve orthostatic
tolerance. <FONT COLOR="#ff0000"
diet should only be
tried under the recommendation and supervision of your
doctor</U
<P
<BIG
table salt on food works
better for most people than the use of salt tablets.
&nbsp;Salt tablets can
irritate the stomach, cause vomiting, and tends to
centralize body fluids
in the digestive tract which is not good for either
blood volume or blood
pressure. &nbsp;For most people salt goes into the
human body more smoothly
and easily when mixed with food.&nbsp;&nbsp;</BIG
<P
<BIG
COLOR="#ff0000"
descriptions of some commonly used drugs for the
treatment of POTS. &nbsp;This
partial list is not a recommendation for any
treatment, just the factual
reporting of some of the drugs doctors most commonly
prescribe. &nbsp;I strongly
urge all POTS patients see specialists in the field
and not ask ordinary
doctors for treatment</U
drugs.</BIG
<P
<BIG
COLOR="#ff0000"
common <FONT COLOR="Black"
the treatment of POTS
and NMH. &nbsp;It is used to stimulate the bodys
retention of salt
and water and it also has a very small and indirect
alpha agonist effect
(vasoconstricting effect). &nbsp;The list of
Florinefs known potential
side effects is hair raising, but at the small doses
prescribed Florinef
is not unusually dangerous. &nbsp;Some patients have
had bad reactions to
Florinef but that is true of all drugs. &nbsp;Florinef
may be dangerous for
patients with Chiari I malformation as it can increase
<A
HREF="http://www.health.adelaide.edu.au/paed-neuro/pressure.html"
pressure</A
makes you expel potassium
so you must take potassium supplements to keep in
balance</U
<P
<BIG
&nbsp;Midodrine </FONT
drug for many patients and is probably the most
effective alpha agonist currently
available. &nbsp;Alpha agonists work by constricting
blood vessels, thus
reducing blood pooling in the lower part of the body.
&nbsp;Sold in the United
States as <FONT COLOR="#ff0000"
Midodrine has the advantages
of being long lasting and is most like the bodys own
natural
vasoconstricting hormones in effect. &nbsp;Midodrine
is a large molecule
that does not pass through the blood brain barrier,
which is helpful for
patients who are drug sensitive.&nbsp; Because you do
not want your blood
vessels constricted when you are supine, it is
essential that
<FONT COLOR="#ff0000"
used before bedtime</U
</FONT
uncomfortable, it is
dangerous.</BIG
<P
<BIG
only prescribed for those
patients who are not seriously overweight, who have
consistently low blood
pressure, and whose&nbsp;main problem is vasodilation.
&nbsp;Florinef is
usually tried first and Midodrine introduced for those
who do not respond
sufficiently to expansion of blood volume. &nbsp;Some
patients have an abnormal
supersensitivity to alpha agonists which can present
serious problems during
treatment.</BIG
<P
<BIG
agonists can be caused
by impaired amine uptake in the nerve endings of alpha
receptors<FONT COLOR="#ff0000"
supersensitivity)</FONT
&nbsp;Abnormal sensitivity can also be produced by a
prolonged lack of
norepinephrine release from sympathetic nerve endings,
which leads to enhanced
receptor responsivity <FONT
COLOR="#ff0000"
supersensitivity)</FONT
usually produce a two to
five times increase in sensitivity level, but there is
a small subset of
patients who are hundreds of times more sensitive than
normal. &nbsp;For
these patients vasoconstricting alpha agonist drugs
are dangerous to use
because of their sheer potency. &nbsp;If your
physician prescribes any alpha
agonist consult with him about taking a very small
test dose first in order
to gauge your sensitivity level. </BIG
<P
<BIG
blockers</FONT
by many doctors to treat POTS and NMH. &nbsp;I have
heard of more bad reactions
to beta blockers than any other drugs used for the
treatment of POTS and
NMH&nbsp;but I have not conducted a statistical
analysis as to their actual
rate of&nbsp;causing medical disasters. &nbsp;Some
patients have found beta
blockers to be helpful, however, especially those
patients who develop POTS
because of an overly sensitive beta adrenergic system.
&nbsp;For these sensitive
patients only very low doses of beta blockers are
usually required.</BIG
<P
&nbsp; <FONT COLOR="#ff0000"
</BIG
hydrobromide)</BIG
COLOR="#ff0000"
COLOR="Black"
reuptake inhibitor similar to
Paxil, Zoloft, and Prozac, but with the claim of fewer
side effects and less
potential for negative drug interactions.
&nbsp;Serotonin reuptake inhibitors
have been used for many years to treat neurally
mediated hypotension and
syncope (passing out). &nbsp;The mechanism through
which central serotonin
levels effect blood pressure and heart rate has not
been fully mapped out.
&nbsp;The net effect of Celexa appears to be to
increase nerve communication
and stimulation of&nbsp;the standing vasoconstriction
reflex. &nbsp;This
limits venous blood pooling and increases orthostatic
tolerance.</BIG
<P
<FONT COLOR="Black"
has been used with some
success in treating patients who have been unable to
tolerate the older drugs
used for treating POTS and NMH. &nbsp;Some doctors now
use Celexa as a 'first
use' drug of choice for treating some types of POTS.
&nbsp;Celexa is also
reported to have the potential for reducing the
effects of central sleep
apnea, which often accompanies the onset of POTS.
&nbsp;Treatment is started
at a very low dose level (5 mg a day or less) and
gradually increased over
time. &nbsp;Taking a full dose immediately is reported
to make patients even
more ill while a gradual increase in dosage is often
well
tolerated.&nbsp;&nbsp;&nbsp;&nbsp;</BIG
<P
&nbsp; &nbsp; &nbsp;<BIG
neurally mediated hypotension
should</BIG
and nitrates in
food</BIG
&nbsp;Most patients also
need to give up alcohol, coffee, tea, and adrenaline
stimulating herbs like
ginseng. &nbsp;Try to avoid eating heavy meals as
overloading the stomach
decreases orthostatic tolerance by drawing blood to
the digestive tract and
away from main arteries which feed the brain.
&nbsp;</BIG
<P
<BIG
COLOR="#ff0000"
day</FONT
&nbsp;Try to keep your
muscles alive as they produce the natural
vasoconstricting hormone
norepinephrine. &nbsp;Good muscle tone, especially in
the legs, helps limit
abnormal blood vessel dilation and blood pooling.
&nbsp;Severely affected
patients may find any amount of exercise difficult but
one can slowly increase
activity over time as you improve. </FONT
just ten - two minute
walks a day adds up to twenty minutes of walking and
can help maintain vital
muscle mass which will increase your orthostatic
tolerance. &nbsp;</BIG
<P
<BIG
to
<FONT COLOR="#ff0000"
than laying in bed
</FONT
</FONT
tolerance dramatically. &nbsp;Astronauts often develop
a temporary form of
orthostatic tachycardia upon returning to earth due to
the deconditioning
effects of weightlessness which are quite similar to
prolonged bed rest.&nbsp;
Exercises can be done even in bed by tensing and then
relaxing muscles in
the arms and legs. &nbsp;When muscle mass is lost it
is difficult to regain.
&nbsp;It is thus important to avoid becoming
deconditioned through inactivity.
</BIG
<P
&nbsp; &nbsp; &nbsp;<BIG
COLOR="Black"
POTS symptoms include working with your arms over your
head, lifting heavy
objects, and climbing stairs. &nbsp;</FONT
temperatures have an especially
negative effect on the exercise tolerance of POTS
patients as heat dilates
blood vessels and diverts blood to the skin, thus
reducing blood flow in
key arteries that feed the brain. &nbsp;Air
conditioning in warm months is
essential.</BIG
<P
<FONT COLOR="#004080"
Help</U
COLOR="#800000"
</BIG
COLOR="#ff0000"
obtain proper professional medical help and do not try
to diagnose or treat
yourself</U
COLOR="Black"
Research Foundation</FONT
are educated in the
diagnosis and treatment of POTS at:
</BIG
HREF="http://www.ndrf.org/physicia.htm"
IG
HREF="http://www.ndrf.org/physician.htm"
</A
POTS should read the
following articles which are from common medical
journals that can be obtained
from your local public, hospital, or college
libraries.
</BIG
copies.</BIG
<P
<FONT
COLOR="Black"
Intolerance
and Orthostatic
Tachycardia</B
COLOR="Black"
&nbsp;<BIG
orthostatic intolerance
David Robertson, M.D., &nbsp;<I
of Medical Sciences</I
February 1999;317:#2: 75-124&nbsp;</BIG
<P
<BIG
(POTS</U
Phillip Low, Opfer-Gehrking, Textor, Benarroch, Shen,
Schondorf, Suarez,
and Rummans. <I
5):S19-S25</BIG
<P
<FONT COLOR="Black"
Orthostatic
Hypotension</U
Hollister, Biaggioni,
RM Robertson and David Robertson of Vanderbilt
University. &nbsp;<I
Journal of Medicine </I
1986;80:454-464</BIG
paper does not deal with POTS directly but has general
information about
the autonomic nervous system and the drugs commonly
used to treat POTS.</BIG
<P
<FONT
COLOR="#004080"
<P
&nbsp; &nbsp;<BIG
mentioned articles you will
know more about POTS and low blood pressure than your
average cardiologist
or neurologist. <FONT COLOR="Black"
know about high blood
pressure, not low blood pressure, and the first thing
uninformed doctors
will usually do is blame the patient for the symptoms.
&nbsp;I strongly
</FONT
instead of trying to educate
your local doctor. &nbsp;</BIG
COLOR="#ff0000"
to treat POTS can be dangerous and an experienced
physician is needed to
determine which drug or treatment is best for the
patient</U
<P
<BIG
little easier than chronic
fatigue syndrome patients as POTS is recognized by
every major medical university
in America. &nbsp;CFS is currently more difficult to
diagnose and thus skepticism
in the medical community remains.&nbsp; <FONT
COLOR="Black"
people with MS, diabetes, and even polio for decades
before a critical mass
of evidence proved they were real diseases.
</FONT
<A
HREF="http://home.bluecrab.org/~health/hm.html"
torture</A
with chronic fatigue
and <A
HREF="http://www.clipper.net/~calder/utility5.html"
War
</A
<A
HREF="http://www.clipper.net/~calder/utility2.html"
intolerance</A
schools teach students
humanity and humility instead of just teaching them
how to prescribe drugs
and mend bones.</BIG
<P
&nbsp; &nbsp; &nbsp;<BIG
collection of disorders with
similar symptoms and thus it is a
<U
disease. &nbsp;POTS, NMH, and CFS can cause tremendous
suffering and disability
yet no government is spending more than a pittance on
medical research to
find the root causes. &nbsp;Despite this lack of
funding, researchers have
made major breakthroughs which brings new hope, but
which also adds to the
confusion.</BIG
<P
<BIG
unified testing procedures
so that patients can be fully evaluated before
treatment is given. &nbsp;Doctors
should know, for example, if a patient has a Chiari I
malformation before
prescribing a drug like Florinef, which might make a
Chiari patient even
more ill by increasing intracranial pressure.
&nbsp;Likewise, neurosurgeons
should be aware if a patient has a genetically
inherited hormone disorder
or autoimmune autonomic neuropathy causing their
orthostatic intolerance
before considering surgery.</BIG
<P
<BIG
known as catecholamine
disorders</BIG
difficulty swallowing, and
other symptoms which may be difficult to distinguish
from symptoms associated
with hindbrain case compression and cervical spinal
stenosis
(<A
HREF="http://www.mc.vanderbilt.edu/gcrc/adc/oi.html"
University</A
advanced testing procedures
for catecholamine disorders). </BIG
at the Mayo Clinic
have identified specific
<A
HREF="http://www.nejm.org/content/2000/0343/0012/0847.asp"
sp;which
are believed to be the cause of approximately 10% of
all POTS cases.
&nbsp;</BIG
should never assume any
specific cause of their orthostatic intolerance
without first obtaining objective
scientific proof derived through
testing</U
<P
<BIG
traditional dysautonomia
researchers join forces with spinal experts and
neurosurgeons to share their
knowledge and make available, <U
the full spectrum of
blood tests, tilt table testing, and magnetic
resonance imagining procedures.
&nbsp;Patients should be aware that a recent study has
shown that up to 98,000
Americans die each year from medical mistakes of all
kinds and one in six
deaths in hospitals is attributed to adverse reactions
to prescription drugs.
&nbsp;There are few, if any, risk free medical
treatments available for any
disease.</BIG
<P
<BIG
magnetic resonance
spectroscopy techniques, which assay the health of
neurons, may be of special
importance in locating the exact root neurological
causes of POTS and NMH,
thus allowing the safest and most effective treatments
to be given. &nbsp;The
advent of stem cell implantation techniques may one
day help patients who
develop orthostatic intolerance and dysautonomia due
to brain stem damage.
</BIG
of these disorders
and more research funding.</BIG
<P
You can send me a note by clicking below.&nbsp; I am
not a doctor or medical
advisor so please do not ask me to make health care
decisions for people
I have never even met. &nbsp;<U
common sense before you
write me</U
fully understand the
desperate, unfair, and downright impossible situation
many of you face.
&nbsp;That is why I try so hard to keep this page
updated with all the most
important medical&nbsp;news. &nbsp;For <U
medical help you need
to see a <U
HREF="http://www.ndrf.org/physicia.htm"
doctors list)</A
case histories of patients
as they add to my knowledge base and help me improve
this Web site. &nbsp;If
you find any relevant research not mentioned on this
page please tell me
about it. &nbsp;I get many useful suggestions from
fellow patients.
<P
Christopher Calder<BIG
</BIG
HREF="mailto:calder@..."
<P
<FONT COLOR="#004080"
Links</BIG
<P
1<B
(NDRF)</B
<P
<A HREF="mailto:calder@..."
HREF="http://www.ndrf.org/"
&nbsp;<SMALL
forum, and general
information.</B
<P
<B
<P
<SMALL
a very good Web site
on POTS and related issues. &nbsp;Scroll down their
page to find useful
links.</SMALL
<P
<A
HREF="http://www.nymc.edu/lyme/syncope/"
/</SMALL
</BIG
Hypotension</B
<P
<A
HREF="http://www.nejm.org/content/2000/0343/0014/1008.asp"
m.org/content/2000/0343/0014/1008.asp</SMALL
&nbsp;<SMALL
Tachycardia
Syndrome</I
<P
<A
HREF="http://www.nejm.org/content/2000/0343/0012/0847.asp"
m.org/content/2000/0343/0012/0847.asp</SMALL
</I
to Ganglionic Acetylcholine
Receptors in Autoimmune Autonomic Neuropathies
</I
<P
<A
HREF="http://www.mc.vanderbilt.edu/gcrc/adc/oi.html"
bilt.edu/gcrc/adc/oi.html</SMALL
&nbsp;<SMALL
intolerance</B
<P
<SMALL
HREF="http://www.med.jhu.edu/peds/cfs.html"
</A
&nbsp;<SMALL
hypotension</B
<P
<SMALL
HREF="http://www.aafp.org/afp/971001ap/engstrm.html"
001ap/engstrm.html</A
<B
<SMALL
to transverse myelitis &nbsp; </B
<P
<SMALL
HREF="http://www.myelitis.org/"
&nbsp;<B
orthostatic
hypotension)</B
<P
<FONT COLOR="#000000"
<A
HREF="http://www.clipper.net/~calder/utility2.html"
Experiment
for Doctors</I
difficulties patients
with chronic orthostatic intolerance syndromes face
every day.</SMALL
<P
<A
HREF="http://home.bluecrab.org/~health/sickids.html"
.org/~health/sickids.html</SMALL
&nbsp;<B
Children</I
<P
<SMALL
HREF="http://www.nejm.org/content/2000/0342/0008/0541.asp"
ontent/2000/0342/0008/0541.asp</A
<SMALL
Deficiency</I
<P
3<B
sites</B
<P
<SMALL
HREF="http://www.clipper.net/~calder/utility.html"
Mediated
Hypotension: Its surgical evaluation, management and
early outcome as part
of the Fibromyalgia - Chronic Fatigue
Syndrome"</A
&nbsp;<SMALL
progress</B
<P
<A
HREF="http://www.clipper.net/~calder/utility1.html"
Street
Journal</I
Observer</SMALL
</I
</SMALL
over proposed surgical remedies for some cases of CFS
and
fibromyalgia.</B
<P
<SMALL
HREF="http://www.co-cure.org/chiari.htm"
SMALL
<SMALL
Chiari/stenosis </B
<P
<A
HREF="http://www.clipper.net/~calder/utility4.html"
Rosner
Answers Questions</SMALL
<P
<FONT COLOR="Black"
HREF="http://www.clipper.net/~calder/utility8.html"
Heffez Answers Questions</SMALL
<P
<A
HREF="http://www.teleport.com/%7Enfra/Symchart.htm"
om/%7Enfra/Symchart.htm</SMALL
size="5"
stenosis symptoms
list</SMALL
<P
<SMALL
HREF="http://members.tripod.co.uk/chiari2000/milhorat-english.htm"
s.tripod.co.uk/chiari2000/milhorat-english.htm
</A
<SMALL
H. Milhorat</B
<P ALIGN=Left
<A
HREF="http://www.neuroworld.com/hyperbook/neurospine/Chiari/1.html"
//www.neuroworld.com/hyperbook/neurospine/Chiari/1.html</SMALL
</A
<P ALIGN=Left
<A
HREF="http://www.pressenter.com/~wacma/mri.htm"
/~wacma/mri.htm</SMALL
<B
<P ALIGN=Left
<A
HREF="http://www.pressenter.com/~wacma/info.htm"
m/~wacma/info.htm</SMALL
<B
<P ALIGN=Left
<A
HREF="http://www.goes.com/billr/html/_anatomy_of_a_spinal_cord.html"
://www.goes.com/billr/html/_anatomy_of_a_spinal_cord.html</SMALL
<B
<P ALIGN=Left
<A
HREF="http://www.umanitoba.ca/faculties/medicine/anatomy/csf-fun.htm"
p://www.umanitoba.ca/faculties/medicine/anatomy/csf-fun.htm</SMALL
</A
<P ALIGN=Left
<A
HREF="http://wwcoco.com/cfids/anesthesia.html"
esthesia.html</SMALL
<B
patients</B
<P ALIGN=Left
<A
HREF="http://www.clipper.net/~calder/utility6.html"
for
obtaining a proper MRI study of the brain and cervical
spine
(neck).</SMALL
<P ALIGN=Left
<SMALL
HREF="http://parkridgehospital.org/rosner.html"
ner.html</A
<SMALL
Rosner)</B
<P ALIGN=Left
<A
HREF="http://www.cinn.org/"
</SMALL
Neurosurgery and
Neuroresearch</B
Heffez)</B
<P ALIGN=Left
<A
HREF="http://www.21cent.net/chiari/"
<B
</B
COLOR="#ff0000"
<P ALIGN=Left
<SMALL
HREF="http://www.chiaripaper.cjb.net/"
of famous Chiari neurosurgeons plus links.</B
<FONT COLOR="#ff0000"
new!</B
<P ALIGN=Left
<B
<P
<SMALL
HREF="http://www.cfids.org/"
</SMALL
America</B
<P
<SMALL
HREF="http://www.cfs-news.org/"
&nbsp;<SMALL
<P
<SMALL
HREF="http://www.cfs-news.org/ajm98.htm"
&nbsp;<B
CFS</B
<P
<SMALL
HREF="http://www.clipper.net/~calder/utility11.html"
Physical
Basis of CFS</I
MD</B
<P
<FONT COLOR="Black"
HREF="http://www.abcnews.go.com/sections/living/HealthyWoman/healthywoman_4.html\
"
Fibromyalgia&nbsp;news story</A
<P
<B
Fleckenstein, Haley,
and Abou-Donia strongly suggests that&nbsp;brain stem
encephalitis/encephalopathy</SMALL
link between CFS,
POTS, and Gulf War Syndrome. &nbsp;Could hindbrain
case compression (Chiari)
and reduced cerebral spinal fluid flow also cause
brain stem
encephalitis/encephalopathy?</SMALL
<P
<SMALL
HREF="http://www.clipper.net/~calder/utility5.html"
War, Brain
Damage Linked</A
Baumzweiger, Haley
</B
Syndrome. &nbsp;The evidence
is now very compelling and has reached '<U
mass</U
<P
<SMALL
HREF="http://www.clipper.net/~calder/utility3.html"
RNA marker
links Gulf War Syndrome and CFS!</A
&nbsp;</SMALL
</SMALL
<P
<B
<P
<A
HREF="http://www.rah.sa.gov.au/news/media/media.htm"
v.au/news/media/media.htm</SMALL
<SMALL
<P
<SMALL
HREF="http://www.clipper.net/~calder/lactic.html"
/lactic.html</A
<SMALL
<P
<P
<HR
<P
<HR
</BODY

Jim,
Thanks for the info.
I will definitely make a copy of the paper and send it
to you. It will be next week as my husband left it at
work and won't be back there until Monday.
The paper doesn't specifically say it affects patients
in late stage MSA. I gathered that from the context. I
don't have the paper in front of me, but I recall it
stating something like, "Eventually patients may
develop irregular heartbeat." Maybe I read too much
into that statement. At any rate, I'll get you a copy
and see what you think. Dr. Jankovic doesn't go into a
lot of detail about it. He just says that sometimes
beta blockers are used and, rarely, pacemakers are
required.
Melanie in OK

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