How Common Is This?

[Allene]

I see another topic similar to this one, but it isn't really answering my questions and I don't want to hijack the thread.

Since my symptom onset in 2008, I have gone through periods where my symptoms gradually become worse over a period of 2-3 months, plateau for a month or so, then resolve and I go back to "normal" (whatever normal is) for a few months. An entire cycle lasts about 6 months all said. Generally each "relapse" is worse than the last, and each "remission" doesn't leave me feeling as good as the last "remission"

A friend of mine is worried that I in fact have (relapsing-remitting) multiple sclerosis that has been misdiagnosed as autonomic dysfunction. Having looked into it, quite a bit matches up but I feel that dysautonomia fits better with the exception of this bizarre cyclical thing I've got going on.

Is this "relapsing" and "remitting" thing normal for those with dysautonomia, or should I be heading to the doctor to talk about MS?

[lieze]

If you're concerned about it and you can get tested for it depending on the cost and invasiveness I would do it.

Every time I have a concern that is ruled out I feel better about things.

Also if you would have MS I would almost think you would want to start treatment for it.

Don't they have pretty good meds for that to help stop it from progressing?

I remember reading a post from a girl that said her husband had so many lesions and after treatment were practically all cleared up.

[Chaos]

Dysautonomia can be a symptom of MS and is common with MS so it's a worth while thing to have ruled out. Usually an MRI can give you a diagnosis for MS these days.

That said, it is common to have relapses and remissions with this but mine are not so regular as you describe. I definitely have relapses when I get sick, but then other times it doesn't seem to have a particular reason for the relapse. We all have different patterns though so yours could just be your particular pattern.

MIght make you feel better to get it checked out.

[sandymbme]

I have the exact same cycle, and for a moment MS was on the list of possibilities. My testing was covered by insurance, thankfully mine is very good. But it was ruled out. They eventually did dx me with EDS type III/Joint Hypermobility Disorder and Celiac disease. Which explains some of the cyclical degeneration going on. But it can also just be simply your POTS. I would thank your friend for their concern, and tell them that if they want to volunteer rides to appointments and other valuable support, you are very grateful. But if they in any way imply that you are not "doing enough" or "trying hard enough" to get well, I would invite them to keep their opinions to themselves.

Sandy

[hilbiligrl]

I seem to cycle as well... with severity, and certain multitudes of daily symptoms...... but not the same cycle as you...... I also have short and long term remissions and relapses....... my doctors first thought MG, then MS.... but after retesting these for an 8 year span, they came up negative everytime..... so last year my twin sister took me to vanderbilt to get a diagnosis, as no one in our area could figure out what was wrong. General dysautonomia. My doc never heard of it and refused to consult with vandy.... so i fired her and found a rare case doc in my area who was willing to take me on and consult with vandy and who had never heard of DYS either, but really wanted to know as much as he could find out.

so, yes, i have noticed over the past 9 years, and especially since I have progressed worse these past 2-3 years..... that there are cycles.... and remissions and relapses....... amazing how it took me till this past 2 years to realize that connection......

you are definitely not alone

hugs

tennille

[brethor9]

Hi Allene

My cycle is actually very similar to yours!! I am still trying to find out if there is another underlying cause because there is a distinct pattern......my specialist is thinking maybe a hormonal connection since I had a partial hyst in 2008 and thats when my symptoms really came to a head.

Bren