Do You Agree With This Statement?

[issie]

My autonomic neurologist believes that CFS, Fibromyalgia and autonomic dysfunction are all related (and possibly the same thing) depending on the most prevalent symtoms -

I keep going back to this. They don't know what CFS is either or what causes it. Since OI is prevalent in this disease (syndrome whatever), I wonder if many of us actually have whatever CFS is. OI is seen in other diseases, but I don't think as often? Hoping once they solve that mystery that it may help some of us.

Yesterday, I was talking with a lady that has CFS/FMS and she said they are connecting CFS to a retro- virus and they are doing some sort of skin biopsy to figure out what type of virus it is. She said that you get over a flare and then the body sends out another attack only slightly different because it has mutated into a slightly different form and then you have to resist that attack and it continues to go on as it mutates however - slightly different - as a life long problem. She got it first and then her husband and now her daughter. So, for the whole family to get it - it's seems plausible that it could be a retro-viruis. I've not looked into this much - because it's not one of my issues. But, this line of thought was very intriguing to me. Thought I'd pass it on. Wonder if POTS could be something like this too. I know a girl, who isn't on the site any more, whose husband got POTS after he married her. Coincidence? Who knows? Let's hope that's not the case - for our families sake.

Issie

[bellgirl]

Does everyone with POTS have a Mitral Valve Prolapse? If the answer is yes, I believe that Dyautonomia is now the catch all phrase for POTS, and now they are trying to put this disorder into subsets, depending on other etiologies, which they haven't quite figured out yet. We need to somehow stimulate more awareness of this problem, and get some doctors who are really interested in this issue. I had an ENT, who did a thesis on Autonomic Vertigo, and was very interested in this. Even though I didn't have any ear diagnosis at this time, other than dizziness/vertigo, he genuinely didn't want to give me up as a patient. He was genuinely interested in this disorder and my well being. Even my Neurologist, although he has not prescribed any of my medication, continues to want me to followup, so it's not that there isn't any interest...I believe it is extremely complicated, and it is making me more respectful of my doctors, knowing this is not an exact science!!

[bellgirl]

Sorry, this post is connected to more of the comments on the first page...I just read the second, now. Still new here Very good discussiion, though! The chicken and the egg theory just came to mind, while I was reading all of this This is why God is, and I am NOT

[jenglynn]

Issie,

The only reason I get frustrated with Mayo and how the DX is how they refuse to consider connective tissue disorders as a factor. I was DX with a "connective tissue disorder", "hyper mobility" and "hyperextendable joints"- genetic counselor strongly feels it is EDS but wouldn't test further because she called it a red herring as far as my autonomic problems- fine- even if that's true (which I doubt) I want to know if I have something. Have a 13 year old with connective tissue disorder- dxed at 12 months and already has had several syncope spells. Paternal great grandpa and paternal grandma both died of burst blood vessels in their brains ( not exact sure of ages- not really old though- I think both under 70)

If its an issue, I just want to know. If not and it is ALL related to this weird autoimmune thing I have going on- fine. But I have a daughter to consider and won't be dropping this because of her, if not myself- but they think I'm crazy every time I bring it up, which is every time they see or talk to me BTW- this is Mayo in Rochester, MN.

Jen

[ramakentesh]

i can often guess where people go based on their diagnosis.

if you want a neuropathy or autoimmune basis then go to Mayo

if you want a hyperadrenergic diagnosis then ... etc.

many differing opinions so someone has got to be right.

Two things that put me off the autoimmune neuropathy diagnosis are that the antibody titers were VERY low and that many claim that treating their pots and increasing regional blood flow improved their neuropathy...

My take is that they are all right in a way.

You might have hypovolumia types with high ang II and perhaps abnormal kidney or dopamine function

You might have poolers who are neuropathic or who have regional abnormalities in vasoconstrictors/dilators

You might have primary sympathetic excess.

[issie]

Jen,

I don't know why they are resistant to thinking that EDS doesn't play a part in POTS. It has been proven that it can. There are many studies proving that SOME not ALL people with certain types of connective tissue disorders have a form of dysautonomia (not necessarily POTS). I was diagnosed by Mayo in AZ and it is acknowledged there. It makes it extra hard to do something about though. It will be a life long thing if our dysautonomias are a direct cause of EDS - but, I don't think that's all there is to it. There are many people with EDS or connective tissue disorders that don't come down with dysautonomia - if that were the ONLY cause than everyone with the disorder would have it. There has to be more factors involved in this. So, even if you don't get the acknowledgement you need for connective tissue disorders being connected to dysautonomia - I still think there is some other component to the equation. (But, that's just me thinking.)

I don't blame you for wanting to over turn every stone - that's how I work and think too. Some people can accept a simple answer and "Do as the doctor ordered". I'm the type that wants to know "WHY, first and then decide for myself if I'll do what the doctor says". If it doesn't make sense - then I question whether or not to do it. I guess my inquiring mind can get me into trouble because I need to know "WHY" first. I'm sure my parents got tired of that question - WHY - usually the answer was "because I said so" - but, my hard head didn't accept that answer either. LOL Would have saved myself allot of grief. But, I think it's made me a little more inquiring and interested in research and I feel it's increased my knowledge of things considerably. So, not a bad trait.

I know this answer won't calm your fears, but - maybe to know you're not alone in your feelings may be of some comfort. Keep trying to improve yourself and don't lie there worrying over what you can't change or have control over. You're pretty sick yourself right now and you have a very supportive husband who seems to be on top of things. The more you learn about yourself the more answers you'll have for your children. What is discovered will be a part of the puzzle for them too. Just hang in there and get better. Know you're thought of and not alone.

Issie

[ramakentesh]

i think Julian Stewart tended to think that some EDS were stomach poolers only.