pinky

thanks ya'll, sorry I have been plumb busy lately and neglected to get back here. I get so forgetfull sometimes. when I say my BP gets too high, I mean it is high for me, high enough to cause head aches, 150 over 85 will begin to cause this problem with me if it stays there. normally my BP is kinda low if I am not taking florinef and mestinon here and there. the problem with me taking a steady dose every day is that my BP is not consistant, I tell all my doctors this and most the time I get a perplexed look, Ive been called a complicated case by a lot of them.

brutesky1, I feel for you and have similar autonomic, gastric and heart related maladies. I too am wondering what kind of doctor to go see next. I have an electrophysicist and had another one that retired, and they by and large don't impress me with knowledge about what to do with me.My family doc. seems to know as much except he doesn't have the tools at his disposal that the ep's do. I have a peripheral neuropathy too and have much better luck getting a handle on that, but with the autonomic thing it just seems to me that there are very few truly qualified physicians out there. the two electrophysicists ive had admitted to me that they knew just a little bit, and my top rated neuro didn't want to touch my autonomic problems, he sent me to the ep's. lol I think my immunoglobulin infusions for the peripheral neuropathy help my autonomic problems more than anything else, I say this because I had some breathing problems and the infusions helped with that. just my opinions though.

I want to take my tiny dose of florinef every other day and sometimes every day depending on my blood pressure. does anyone here do this, or know if it would cause me harm. It's been working fine for me this way but I know I need to ask some doctors about this. Having peripheral neuropathy and autonomic neuropathy and taking paxil, Toprol, florinef and mestinon and sometimes my BP runs low for a little while and sometimes it runs a little high and when it runs a little high I need to throttle back on something to prevent headaches. I tried cutting back on the mestinon dose last year and it didn't effect the BP fast enough or at all.

thanks ya'll!

I know a guy who went with an outfit way out of state and it worked fine, he never met them face to face either, just phone and computer I guess. that being said I found a great local lawyer in my area who specializes in social security disability and also workmans comp cases. they were great and I got the disability on the first try in 5 mos. their name is harbison and Kavanagh in Mechanicsville Virginia. I don't know if they would take a case that far away though, you may have to go with a large outfit that has reps all over.

your so welcome! what kind of doctor are you seeing if I may ask? At any rate it sounds like they are actively working towards a diagnosis. when they told me what I had, it was such a relief to finally put a name to it.

so how would a person know if they have mcas and what would they take for it? you know I was getting an ivig infusion yesterday and two MS patients were talking about taking something for mast cells and they were sayng something about biotin and having a compounding pharmacy make it up for them.

going to a gastro doctor was a bust for me except for removing a polyp. my autonomic problems are very gastro oriented, my system is too active. and the gastro doctors can't ever find anything wrong with my guts, that's because it was autonomic and the 4 doctors I have been to were clueless about treating an autonomic root to the problem. I see a lot of people here have a too slow gastro system, this autonomic thing presents differently from one person to the next.

I get those nerve tests every 6 mos. and it can be uncomfortable depending on how much sensory function a person still has. this is just my opinion from experience because I have peripheral neurapathy and autonomic neurapathy also. They are doing the nerve test and I had a spinal tap too in order to diagnose the peripheral neurapathy I have, and my neurologist sent me to an electrophysicist heart doctor for the autonomic problems I have. getting to the right doctors is half the battle. I had the autonomic neurapathy for 13 years before getting to a doctor who even knew what it was. My neuro muscular doc. didn't want to treat both and sent me to the electro. phys. for the autonomic thing. If they want a spinal tap too, don't fret about that either, I was scared to death for no reason, the only thing I felt was the numbing shot, nothing to it, just had to stay lying down for 4 hrs. afterwards, this stuff will give them what they need to diagnose what they are dealing with.

thank you so much Katybug! you have been so kind in helping get me set up and in making me feel welcome.

hello to all! just wanted to introduce myself as a new member and give a brief description of my ailments that brings me here. first off I need to converse with others with like problems because I feel alone and isolated. I have autonomic neurapathy and also a peripheral nerve disease called C.I.D.P. which is the chronic version of guillion barre, also anxiety and depression problems which are being successfully treated. am 55 yrs. old and retired in dec. after 31 yrs. because It was just too much for me anymore. put in for disability and received it in 5 months. Am taking I.V.I.G infusions for the cidp and mestinon and florinef to help with the dysautonomia. I take paxil er and Ativan for the anxiety and it works. I have a particular set of dysautonomia problems that I have never ever heard of anyone else having and maybe will talk about that soon but just wanted to say hi to all of you, sincerely, kip