Mystery Posted August 3, 2015 Report Share Posted August 3, 2015 Hello. After seeing my neurologist again I am being referred to Universiy of Michigan Hospital to confirm my dysautonomia. We have run multiple blood tests, MRIs, echocardiograms, and neurological exams to look for 'secondary' causes to no avail (see my previous post.) As of now he suspects some primary form of dysautonomia but also mentioned 'parkinsons plus' diseases (very scary.) He keeps emphasizing that these conditions are very hard to tell apart from one another in the beginning stages and that I might not have a clear diagnosis for some time. It will be multiple weeks before I get to U of M and I am stuck waiting. My most debilitating symptom remains unrelenting orthosstatic hypotension causing lightheadedness, brain fog, and dizziness when standing or walking. Comments, questions, opinions greatly appreciated. Thanks so much! Quote Link to comment Share on other sites More sharing options...
Katybug Posted August 4, 2015 Report Share Posted August 4, 2015 Sorry that you are still waiting on diagnosis. If it is any consolation, I was fully evaluated for Parkinson's and MS as well as autoimmune diseases before figuring out I had POTS. Keep your chin up....the weeks to the appointment will go by faster than you think. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted August 4, 2015 Report Share Posted August 4, 2015 I had the same experience. Drs often and understandably want to rule out other conditions that have significant symptom overlap. I know it is scary and very difficult to still be waiting for a definitive diagnosis. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted August 4, 2015 Report Share Posted August 4, 2015 Sorry to hear that you are going through all this Mystery. I went through the same things as Katie and Katherine described as well. They suspected Parkinson's at one point because when my anxiety peaks I have a noticeable tremor, as well as the autonomic dysfunction. It had to be ruled out so we could move onto other things. Wishing you the best,Sarah Quote Link to comment Share on other sites More sharing options...
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