dkd

The nerves to your fingers come through your neck, so try to be more aware of your pillow/neck positions when you sleep. Try to keep your neck as straight as possible-not kinked up or down. I know it's hard though!! I have permanent tingling in my left hand (index and middle fingers) but other fingers can get numb/tingly also and yes, it can be the opposite side of the one I'm sleeping on. I was diagnosed with degenerative discs at C5-7 two years ago--before the dysautonomia.

Wow. I'm ready to try some b12 supplements at least. It has crossed my mind before to ask my doctor to test for it, but then I forgot when I actually got in for my appointment. Anyone else gonna try it? I think it couldn't hurt, right???

I've recently started taking midodrine (a really low dose though--5mg twice per day) and haven't noticed any bad side effects yet. From what I know, it doesn't stay in your system very long, so even if you try it and have a bad side effect, it'll be out of your system soon. Just keep a check on your blood pressure and see how you do.

It might be helpful for you to purchase one of those finger pulse oximeters just to see what your oxygen levels are. I know it helped me to know that even though I felt short of breath, my oxygen level was ok. I don't have those feelings all day long though, just for a few minutes per time (but several times per day). Sorry you're feeling so bad

I did not get the H1N1, but the regular seasonal flu vaccine in Oct. 2010. 4 days later, I had terrible arm pain that made it's way down my arm over the next two months that eventually settled into numbness/tingling in my index and middle fingers. Was finally diagnosed with degenerative discs in my neck (C5-C7). I started having numbness and tingling in my face this past November and eventually over the months, have been diagnosed with dysautonomia. A co-worker of mine is convinced that the flu shot started the whole thing. There will never be any way to prove it, but I am suspicious of it at least!

There is no cure for autoimmune diseases, so even if this is found to be autoimmune, at best we could take immunosupressive drugs which have problems of their own. I have a close friend that has Crohn's and Sjogren's and has to inject herself twice per month with Humira, take a daily drug that was meant as a chemotherapy drug, and she still has problems. I don't know, I guess I'm being pessimistic

Have you tried speaking with the nurse instead of the office staff? I think I'd try that next. I'm pretty upset with my dr's office right now also. I just had a prescription called in over the weekend that was WRONG and for 2 days, I took a diuretic instead of a beta blocker. I lost 5 lbs of fluid in 2 days! The nurse blamed it on the pharmacy and the pharmacy blamed it on the nurse. Guess I'll never know the truth, but I'm going to let the dr know about it next time I go in.