Mystery

Hello everyone.

I just relieved a letter from the neuropathic pain clinic at University of Michigan and I have been put on a one year waiting list. (This is the clinic that my local neurologist referred me to) Even if I waited a year, I fear I would be seen by doctors with little knowledge of dysautonomia or other related conditions.

I am desperate to find a doctor and/or clinic in Michigan (or maybe even further away) familiar with dysautonomia related conditions and I would really appreciate any help in finding one. (The physician list at DINET.org is good but some of the more promising doctors are no longer in practice.)

Thank you everyone!

Sounds familair, although mine happens mostly when standing and especially when walking. It can take a long period of sitting after these activities to get back to normal. I find that i am able to stand/walk longer if I have been inactive for a few days before.

Has any doctor been able to offer an educated guess on what it could be?

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!

Thanks Sarah and everyone else.

No headaches or numbness. I had an echocardiogram two weeks ago and there were no abnormalities with my heart. After my last visit with the neurologist he ordered some blood work to test for autoimmune disease and a CPK test for muscular disease. No tilt table yet, as it seems like he is more interested in going after the possible underlying cause of the symptoms than diagnosing dysautonomia alone.

In the past two weeks I have developed an upper body rash that was diagnosed as tinea. I also have molluscum contagiosum bumps in the genital area that have been around for six months or more. I often wonder if they are related to an autoimmune disease or viral infection that could be causing my dysautonomia...

Great point Lemons. So much unfamiliarity in the medical community. It's soooo important to refer to this condition as Autonomic Dysfuntion FIRST before anything else.

Thanks for your responses.

My neurologist ordered some blood work to start to look for autoimmune disease. I should have the results next week.

I will ask him about tilt table testing the next time I talk to him.

Hello everyone. I am excited to finally join the forums after much lurking. There is such good information here and I will truly appreciate any input and support that anyone has to offer!

Symtoms: Occurring for 3 Months plus.

Debilitating Lightheaded/dizzy/balance problems/confused when standing or walking for over 10 minutes. Completely gone after 5 minutes of sitting or laying.

Moderate/severe weakness in limbs (worse on left side.)

Moderate Loss of coordination in left hand.

Muscle fasciculations in arms, legs, hands and feet.

Dry mouth when standing or walking.

Shortness of breath.

Tests/Findings (tests and procedures performed in April, May, and June)

Neurological exam: Weakness in left hand

EMG: Normal

Nerve Conduction Study: Normal

Brain MRI: Normal

Brain MRI (1 month later:) Normal

Cervical Spine MRI: Normal

Blood tests: All Normal

Test Name : 25-Hydroxy Vitamin D, Total