Saw autonomic neurologist- Share experiences?

[warmwaters]

Hi -
In a strange way, I'm very happy and thought I would share. After seeing multiple doctors, one of my neurologists (whee, I already had 2) referred me to an autonomic specialist, who I saw today.

The reason I'm happy is I had a very thorough appointment with first a very sharp nurse practitioner who reviewed possible vitamin deficiencies (B1, B6, B12 and D3), and then the neurologist, who asked many detailed questions, LISTENED, and was willing to look at all the pieces of the puzzle that is my health. Including Sjogren's, immunodeficiency, and IBS.  Did a series of hands on diagnostics.

It's likely I've got some autonomic involvement - I have problems with fluctuating temperatures, flushing, lightheadedness and IBS, as well as cognitive issues.

So I've had many vials of blood drawn, and will have autonomic testing and a brain MRI.  The doctor made clear that if I do have serious issues, we need to go to immunosuppressants (I've been off those for a while because of how easily I get infections).

So for those of you with autonomic issues - I'd love to here more about your diagnosis and treatments. I've already read some of the threads, and as always, appreciate you sharing.

It's weird to feel so happy - I think it's just so often we can't get someone to listen to us about there being something wrong - I've been trying to get help for some of these symptoms for over 3 years.

[zopdeep]

It's hard to pin down autonomic issues and it's great that you found a specialist. There are a battery of autonomic tests I'm sure they will run.

Read about testing at http://en.wikipedia.org/wiki/Dysautonomia and http://www.mayoclinic.org/diseases-conditions/autonomic-neuropathy/basics/definition/con-20029053/

My autonomic issues include digestion, lightheadedness, cognitive issues, and low BP (90/60). They are secondary to a small-fiber peripheral neuropathy. FYI the autonomic nervous system is part of the peripheral nervous system. Small-fiber neuropathy diagnosis is confirmed by a skin biopsy. It is a benign procedure.

I happen to be undergoing a flare, but my symptoms are under control with immunosuppressant treatment (Rituxan) prescribed for the peripheral neuropathy. Even still the stomach issues need further treatment.

I take Dexilant (PPI), apple cider vinegar/water in the AM and do my best to be vigilant on an acid-reflux diet. These all help a lot with IBS type issues. It takes a few weeks to see the change. The Dexilant causes me constipation but it does wonders for the acid reflux that plagues me otherwise and causes sinus issues when at it's worst.

After the testing you will have a better idea of treatment options. Best of luck.