2nd Dr. Appt Today - What should I ask?

Sorry this is so long. I'm scared.

Last month I went to an MVP, Dysautonomia clinc in Birmingham and got diagnosed with Dyautonomia, (POTS and OI...not sure what else, but they say my heart is OK and I can start exercising. I'm sure I'm deconditioned from fatigue) I was Dx'd with fibro in 1995, Discoid Lupus in 2006, but had been having immune and neuro symptoms several years prior. I think my PCP has Dx'd me with CFIDs, too, but usually just writes fibro, fatigue and malaise on my chart.

What am I worrried about is that one of my brothers has recently gone to nursing home because of serious neurological problems affecting his legs and one arm. I think it may be MSA. He is also schizophrenic and has abused drugs and alcohol.  My other brother has Discoid Lupus and other symptoms similar to mine (fatigue, major joint pain). I am 49 they are 55 and 56.

Does anyone know of siblings with similar problems? Is it a common thing?

I want to know what tests I should push for to find out if I might have AAN or something else that might cause me to go downhil from here. I am struggling to work 30 hour weeks wondering if I should use FMA to try to get healthier and/or look into SSD. If I'm going to get worse I want to do whatever I can now to preserve as much functioning as I can and try to focus more on quality time with my family.


I'm going to get a sleep study soon. Have also wondered if I could have Chiari. Last MRI showed no change from 2 years ago, They were looking for MS. Some small spot on the left, but they said it was nothing to worry about and it  hadn't changed. The neuros here are main stream and have high caseloads.

Could anyone give me suggestions about what to ask my Dr. today? She is a cardiologist. Should I try to find a neurologist out of town that treats Dysautonomia?

Any suggestions or comments will be greatly appreciated.

[Heiferly]

Have you had a QSART?  That's a quantitative sudomotor axon reflex test, and it looks for post-ganglionic nerve abnormality in the autonomic (sudomotor ... but don't worry too much about the technical aspects) small fiber nerves.  Abnormal results on a QSART can be further studied by specialized skin biopsy for small fiber neuropathy.  These tests are available at a limited selection of facilities in the US; it's a bit hit-and-miss, but more widely available than the "full" battery of autonomic testing which is only available at (literally) a handful of hospitals nationwide.  (Those hospitals are listed here, in case you're not aware of them:)

http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196

If I were you, I would address the same concerns you share in this message with your doctor.  They may want to refer you to a genetic specialist who may be able to counsel you further on what hereditary risks you have, and suggest targeted testing based on your family history.

Many of the "big name" Dysautonomia specialists are actually Cardiologists ... perhaps as many as are in Neurology, so you don't necessarily need a neuro to be the supervising doc on your case.  POTS is especially frequently the providence of cardiology because of the vascular aspects of the disorder.  If you are comfortable and happy with the cardiologist, you don't necessarily need to have a neuro.  Or you may find that having both complement each other.  I personally have a (perhaps rather LARGE) team of specialists that I've amassed to handle my case, and each focuses primarily on their own niche.  If it works for you to have separate doctors for each of your diagnoses, do that.  It's probably more personal preference than anything else.  I do know that dysautonomia specialists are much more scarce in your region of the country than in the Midwest where I live, so you've done well up to this point getting yourself properly diagnosed, etc.!

As for the decision between work and disability, unfortunately only you (and perhaps your doctors) really know what your body (and your mind) can tolerate.  We have people here in the forum on both sides of that equation.  I do think it's a VITAL discussion to have with your docs, and to have *regularly*.  Our doctors don't see us in our day-to-day lives, so we need to keep them informed on how we're actually functioning (or not).  

I hope your appointment goes well and look forward to hearing from you again.
Take care of yourself!
-Heiferly.