emmalily

Yes, I've read through that and am contacting several of them, but thank you for the suggestion. I'm looking to see what other doctors are not on that list that people can recommend. Thanks!

I need a doctor to evaluate me for Dysautonomia. My primary care/autoimmune specialists are at a loss of where to refer me so I'm looking on my own. Could you please PM me with suggestions in the New York, Massachusetts, Rhode Island, New Hampshire, Connecticut, Vermont, Maine, New Jersey, Maryland, Delaware, or Eastern Pennsylvania. Thank you very much.

Thank for the responses. I initially assumed it was blood sugar related too because I wasn't eating well while sick with with the autoimmune stuff. But since treatment my appetite has returned and I am a day long grazer so my blood sugar doesn't have much of an opprotunity to drop. And this happens plenty of times on days I where I haven't eaten really well so...don't really know, haha. The autoimmune disorder is related to Rheumatic Fever and is treated with long-term antibiotics. Yes, I know that antibiotics can cause gut problems, but I was having these episodes long before going on the antibiotics, and in fact the number of episodes has lessened significantly since starting antibiotic treatment. I used to have up to three a day...now I have about three a month. So getting better, but the unpredicatbility of them and the not knowing what they are is really getting to me so that's why I'm pursuing it further with some doctors. Thanks again for the responses.

I'm 20 years old, have been suffering from an autoimmnue-neurological disease since I was fourteen, but which wasn't diagnosed until I was 19. Since I have begun treatment for the autoimmune disease, I have noticed all those symptoms go away, but had some linger that and they are not at all in line with the traditional symptoms of the autoimmune disease at all and seem like something seperate. The most worrisome of which is the attacks detailed below: They consist of this: an uncomfortable feeling in my stomach that radiates out into my chest. I feel pressure on my chest and feel as if I am being smothered (although those watching me say I am breathing normally I feel as if I am sucking air in). It feels like a pressure on my chest and I cannot take a deep breath because it hurts. My heart rate increases. I get charlie horses in the back of my calves. I often pace or squirm because I feel like I need to move around, but I'm getting better at just lying down and waiting it out--they seem not to be so intense if I can lay down through it. The muscles in my legs seem to constrict and lots of times I curl up into a ball because it's more comfortable. Sometimes I get hot. The smell of everything around me becomes very intense, lights seem bright and loud noises hurt my ears/make me feel uncomfortable. Sometimes I feel a litle shaky like you would after being surprised and sometimes I shake so hard my teeth chatter. I am incredibly nauseous (even if I was just eating ten minutes before). It's the sort of nausea you get with a stomach flu but I don't have that kind of sharp stomachache; like I said before it's just an uncomfortable feeling, sort of rising up from the stomach to the throat. I also feel like I need to burp but I physically cannot. I also cannot swallow (tried to drink water, not very comfortable at all). Lots of times I feel like my digestive system stops moving (it's a very strange sensation, I can't explain it well) and then I suddenly cramp up in my lower stomach and have to go to the bathroom. These last from 30 minutes to an hour. Many times I have to urinate very suddenly as they are ending. Sometimes I can feel them coming on for a couple hours before the heart rate starts going (generally I have GI sensations and feel a little shaky and sort of distracted (foggy-headed I suppose is the best term). The only pattern I can find with this is that it usually happens when I've gotten less than seven hours of sleep or sometimes if I've gone too long without eating. I'm getting maybe four a month. They are not related to emotional stressors. I actually had one on the way to my naturopath's a couple weeks ago and was about fifteen minutes into it when I got there. She listened to my heart rate and it was about 100 while I sat very calmly and quietly on the table (and I was very relaxed emotionally because I knew she was taking care of me; I was not worried or upset at all). She listened to my stomach as well and then we sat down and talked and I was very squirmy because my heart was still "running a marathon" as she said. She said the smothered feeling was because my heart was using up the oxygen too fast for someone sitting down and that it wouldn't feel so strange if I was out jogging up a hill (which made a lot of sense to me, I'd never thought about it that way). After I was there for a while it finally tapered off a bit (lasted about forty minutes, heart rate stays up for all of that). She took my blood pressure after the heart rate had gone down to almost normal and it was about 140/80 which is really unusual for me. I was fine after that besides being seriously exhausted, went clothes shopping for several hours then went to visit my grandmother. I took my blood pressure at her house (she has a cuff) three hours after the attack and it was about 115/80 which is still kind of up for my usual blood pressure. Also, one other small observation, don't know if this would support a nervous system problem or not, but I've found that I'm very sensitive to sensory things now, post-autoimmune diagnosis. I've really noticed in the last couple months. Things like the buzzing of fluorescent lights or freezer cases in the grocery store, perfume, the motion of riding in the back of a car. I tend to get nauseated with all of those (does that even make sense? to be nauseated by things like annoying noises?) and I'm especially sensitive to those in the day or so following an attack. I'm just wondering if anyone has felt this or it does sounds like Dysautonomia to you. I'm in the process of getting to some specialists, but the waiting was getting to me so I thought I would consult this forum Thanks so much!