Eds People

[Janey]

Have any of you EDS-ers noticed that wikipedia has this to say about dysautonomia?

"Prognosis: The outlook for patients with dysautonomia depends on the particular diagnostic category. Most forms of dysautonomia resolve within 2-3 years and are not life threatening, even if life changing in the form of minor to major limitations in activities of daily living. However patients with Ehlers-Danlos Syndrome, Marfan Syndrome or Parkinson's disease have a chronic, progressive, generalized form of dysautonomia in the setting of central nervous system degeneration, leading to a generally poor long-term prognosis."

Can this be true? Or is "just POTS" not dysautonomia?

[flop]

Hi Janey,

wikipedia can be a wonderful way of quickly finding information but it can also be very misleading. Because anyone can write and edit the articles and they are not proof-read or peer-reviewed like medical journals and books there can be some huge mistakes in the information.

In regards to this specific article I think that there are several issues:

- Parkinson's disease is a degenerative neurological condition.

- EDS is not a neurological condition, nor is it degenerative.

- Parkinson's disease is associated with generalised autonomic dysfunction as part of the neurological disease process.

- EDS is associated with POTS as a specific form of autonomic dysfunction.

- The autonomic problems of Parkinson's are often progressive and degenerative.

- POTS due to EDS is not progressive.

- Post viral POTS and teenage POTS tend to improve over 2-3 years.

- POTS due to EDS tends to be a life-long chronic but stable condition, many people reach a level where they can function but have flares when their body is under extra stress.

I think that whoever wrote / edited the article has tried to simplify several statements into one and the result is a mis-leading confusion! Please don't worry, the majority of people with EDS and POTS do not get worse, but we are less likely to fully recover than other people with POTS. With the correct treatment many people with POTS and EDS lead happy fulfilling lives (and many are now too busy to post here so we don't get to hear the sucess stories as often as we hear the stories of those who are still struggling with symptoms).

Flop

[Janey]

Hi Janey,

wikipedia can be a wonderful way of quickly finding information but it can also be very misleading. Because anyone can write and edit the articles and they are not proof-read or peer-reviewed like medical journals and books there can be some huge mistakes in the information.

In regards to this specific article I think that there are several issues:

- Parkinson's disease is a degenerative neurological condition.

- EDS is not a neurological condition, nor is it degenerative.

- Parkinson's disease is associated with generalised autonomic dysfunction as part of the neurological disease process.

- EDS is associated with POTS as a specific form of autonomic dysfunction.

- The autonomic problems of Parkinson's are often progressive and degenerative.

- POTS due to EDS is not progressive.

- Post viral POTS and teenage POTS tend to improve over 2-3 years.

- POTS due to EDS tends to be a life-long chronic but stable condition, many people reach a level where they can function but have flares when their body is under extra stress.

I think that whoever wrote / edited the article has tried to simplify several statements into one and the result is a mis-leading confusion! Please don't worry, the majority of people with EDS and POTS do not get worse, but we are less likely to fully recover than other people with POTS. With the correct treatment many people with POTS and EDS lead happy fulfilling lives (and many are now too busy to post here so we don't get to hear the sucess stories as often as we hear the stories of those who are still struggling with symptoms).

Flop

*phew!*

Thanks for that,Flop!

[flop]

You're welcome!

[Maxine]

EDS can cause secondary neurological problems, and many folks with EDS have MS, or have upper spine/cranial instability that causes more neurological deterioration. There's collagen all over your body, including the myelin sheath. http://msj.sagepub.com/cgi/content/short/14/4/567

http://www.neurologyindia.com/article.asp?...1;aulast=Mathew

I have several lesions in my brain, but docs have not diagnosed MS----- (uuuuuhhhhhhhhh----"we don't know what's causing them",,,,,,,uuuuhhhh, maybe migraine.....uhhhhhhh----duuuhhhhhhh....eeeeeeerrrrrrr...I don't know....

Maxine :0)

[brownsea]

thanks for that info. ive read the articles on wiki too.

hopefully in the next couple of weeks im going to be tested for eds, fingers crossed.

[andy271160]

Accidently found this post and while it is certainly true that the huge majority of Dysautonomia are not life limiting (in years) I am one of the very few who fall under the catergory of

'having a chronic, progressive, generalized form of dysautonomia in the setting of central nervous system degeneration, leading to a generally poor long-term prognosis'

Life expectancy is an average of 7.9 years fron onset of symptoms, I feel let down that it has taken the specialists 5.5 years to finally diagnose it!!!

Most of the last few years were wasted with them trying to get me to accept it was a functional disorder (in the mind) So anyone with any doubt push and push harder for a full and substantive diagnosis.

I do recognise in all the posts I have read a huge difference in symptoms and whilst we share several, some key significant ones seperate the 'lucky' one from the very FEW others.

Not seeking to cause alarm more to re-assure eveyone that the poor prognosis in wikipedia is extremely rare only one other case known of in the uk.

Andy

[KareBear]

Andy, I was curious what difference in symptoms you have compared to others that you mentioned? (If you don't mind sharing) i'm sorry it took your docs so long to diagnose you. So many of us dont know the cause of our dysautonomia or POTS and that's frustrating.

How did they diagnose yours? It sounds like you were lucky to get properly diagnosed in the UK. Do you know what the statistics in the U. S. are for the type of dysautonomia you have is?

[andy271160]

Hi MedicGirl

Thanks for the question,

Reading my post back I can see that whilst my intention was to put peoples mind's at rest what I have actually done is to appear as if I could diagnose medical issues which I simply cannot, what I was trying to get across was that everyone here has some common and some individual diagnosis, but there is a common thread, however I have a combination of symptoms often similar to many other people but I also have a number of specific symptoms that non of you seem to have, it was this combination of symptoms along with years of tests that finally gave my diagnosis.

I can see that you are interested in that list of specific symptoms/test results which led to my prognosis, On one level I should list it out so others can relate to it, However as I am sure you will understand that if I or anyone said "this symptom plus that symptom plus that test result = fatal desease" then I would scare the **** out of so many people and cause so much distress to them and their families, some whom are already vulnerable, it would a lot of harm and no good, so please accept that I am, in good conscience not wishing to hurt anyone. My god I sound so patronising which I am not, Do you understand??

On a more IMPORTANT point I see the latest diagnosis you have regarding cancer and I do offer my heartfelt best wishes, my wife is going through cancer and I can relate to a few of the many feelings you must be bearing, I do understand the grading system.

Best wishes

Andy

[KareBear]

It's no problem, Andy, I completely understand your reasons. It does make sense. I was only curious since I dont believe I have heard of the type of dysautonomia you have and I am a medical geek and love learning. I'm very sorry you are going thru that and being a rare disease makes it tough to find others that can understand I imagine. Thanks for the response and well wishes!