Rachel Posted March 28, 2007 Report Share Posted March 28, 2007 (edited) Hi Everyone, I need some help brainstorming!!! Despite the brain fog we face, I know that there are a lot of smart people here on the board. I?m hoping that some of you can help me! My POTS and NCS have changed a lot over the years. And the antibody that was originally proved to be the culprit of my dysautonomia, is now gone. I?m trying to figure out what to look into next as far as tests and treatments go.It seems that the more questions I have answered, the more questions I have! Any help you can give will be greatly appreciated.I?ll summarize my health over the last 15 years:1990: unexplained nausea problems1991: ligaments in feet tearing and I needed special-made orthotics. PT told me that I?m too flexible and my ligaments are too loose. 1993: difficulty breathing in swim practice and competitions Extensive allergy and asthma testing, all negative1994: mono-like fatigue all labs normal eventually diagnosed with NCS.1995: diagnosed with POTS Johns Hopkins finds an antibody in my blood to m2 muscarinic receptors (part of the ANS system). This was what was causing my dysautonomia.1996: We still hadn?t found a med that worked for me, but a few other things made life with POTS and NCS manageable. Lots of fluids, counter maneuvers, diet consisting mainly of raw fruits, raw vegetables, whole grains, nuts and chicken.1997: I was functional again. Not normal, but functional. People who didn?t know me well would have no idea that I struggled with my health. 2001: My health started getting worse again. In 7 months I went from being able to work 32 hours a week at a grocery store (standing!) to wondering how I would make it through my wedding and reception. Counter maneuvers, diet, and fluids were no longer working.2002: cut back drastically on activities, worked part time2004: no longer able to work2005: no longer able to cook, do laundry, clean, etc., and often bedridden 2006/2007: same as 2005, just not usually bedriddenSo?basically, I struggled with POTS and NCS in the 90s, but learned what my body needed to survive. I got along fairly well for 4 or 5 years. And then it was like all of a sudden nothing worked anymore. And my health rapidly declined. We checked again (just this month) for the antibody that was found in my blood because I was starting to wonder if plasmaphoresis would be my only hope for treatment. But the antibody is now gone. Can autoimmune things clear up on their own? Is that maybe why I felt better for a few years?I suspect that I?ve had EDS all along. Maybe that is why my POTS never completely went away even during the 5 “good” years. But could something else have happened in 2001 that caused my symptoms to become so severe? Or can EDS cause POTS to be this severe?My main new symptoms are:Overwhelming fatigueMuscle weaknessCognitive difficultiesGreat difficulty falling asleep, staying asleep, and getting restful sleepChemical sensitivitiesOther than the above, my symptoms are mostly the same. They?re just much worse.Here is a list of things that I have been tested for in the past year:Myasthenia gravisMSChiariMycoplasma blood infectionMitochondrial diseaseLyme diseaseAcetycholine antibodiesM2 muscarinic receptor antibodiesVitamin B deficienciesThyroid, blood count, etc.I?m going to have an echo done tomorrow. Does anyone have any ideas for what could be causing the extreme fatigue, weakness, and sleeping difficulties? Any ideas for other tests to do? I don?t want to give up yet. I?m just so confused! The POTS I?m dealing with now is so different from what I dealt with in high school. So I?m wondering what is going on. I apologize for such a long post. If you made it through my whole post, congratulations!!!! If you just skimmed, I understand! If you're able to brainstorm with me, I'd appreciate the help!Thanks,Rachel Edited March 28, 2007 by Rachel Quote Link to comment Share on other sites More sharing options...
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