RichGotsPots Posted March 13, 2012 Report Share Posted March 13, 2012 If I left any out then please add below and if it's a specialist please put a link to a list. I'm looking for a list of Chronic Fatigue Specialist in NJThanks,Rich Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted March 13, 2012 Report Share Posted March 13, 2012 Hey rich, don't know where you are in n.j. but I think there are some good pots specialists up in NY. I think Stewart is up there. Not sure though. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted March 13, 2012 Report Share Posted March 13, 2012 There are different types of neurologists, my neuro specializes in autoimmune neuromuscular disease. He does qsart and skin biopsy for SFN. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted March 14, 2012 Author Report Share Posted March 14, 2012 Stewart wont take me, he is a pediatric cardio only and his studies only go up to 29, I'm almost 34... Only doc there is in NJ is Dr Tullo but he specializes in Fainting his website is www.njfaint.com and I don't faint. I once saw a Dr. Riley in Princeton, NJ but he only comes 1-2x a month otherwise he is in Philly. Dr. Riley basically wanted to do a 30 day holter and I didn't see the point. I thought he was good just not really doing any special testing or treatment that could help me.I'm looking for some lab-type of testing and someone that could point to some autonomic problem causing my breathing issues. Fatigue doctors seem like a good option but the only list I found so far has really holistic doctors treating fatigue... Quote Link to comment Share on other sites More sharing options...
janiedelite Posted March 14, 2012 Report Share Posted March 14, 2012 Dr. Tullo actually specializes in not just fainting, but dysautonomia in general. He states on his website that he's able to evaluate and treat autonomic disorders. The folks from DINET who've seen him lately had positive comments. I believe he has a tilt table as well as some other autonomic testing available. If he's close to you, he may be a good resource. Quote Link to comment Share on other sites More sharing options...
klgpdx Posted March 14, 2012 Report Share Posted March 14, 2012 I had a naturopath who found me a cardiologist who could diagnose me, but neither were capable of working with me on treatment. The cardio wanted to try medication after medication, all of which I reacted to (possible MCAD). Finally she said "POTS isn't fatal, it's just annoying, so sometimes it is better to just live with it than take a medication with side effects." While I agreed that I shouldn't take the medication she prescribe, I couldn't handle that she wrote a nearly debilitating disease off as "just annoying." And my naturopath wanted to find nutritional explanation (including telling me I have an eating disorder) which simply wasn't there.So actually, my personal trainer and chiropractor have been the catalysts to my improvement. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted March 18, 2012 Report Share Posted March 18, 2012 Integrative / functional. These are mds who are also trained in holistic medicine so you getthe best of both. Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted March 18, 2012 Report Share Posted March 18, 2012 my "other" vote was NONE. Still looking..... Quote Link to comment Share on other sites More sharing options...
songcanary Posted March 18, 2012 Report Share Posted March 18, 2012 I voted rheumatologist because he was the one who initially took my history seriously and got me on doxepin and scheduled a TTT. But now I am treated by my EP who added Florinef. I give my rheumy credit though, because he's the one who got the ball rolling. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted March 19, 2012 Author Report Share Posted March 19, 2012 Dr. Tullo actually specializes in not just fainting, but dysautonomia in general. He states on his website that he's able to evaluate and treat autonomic disorders. The folks from DINET who've seen him lately had positive comments. I believe he has a tilt table as well as some other autonomic testing available. If he's close to you, he may be a good resource.I will probably end up seeing Dr Tullo, because he is literally the only specialist in the state.. But someone on here wrote me a PM saying "I did see Dr. Tullo, I was diagnosed at the Mayo clinic and he didn't seem to be the most up on things for POTS...." so not too confident about him yet. Unfortunately all the specialist in NYC don't take my insurance, I'd really like to see a POTS neuro.. Quote Link to comment Share on other sites More sharing options...
FarmerAmy Posted March 26, 2012 Report Share Posted March 26, 2012 My psychiatrist has helped me the most. He prescribed Klonopin for me, which has helped a lot. He also thinks it is important to find ways to calm my over-active nervous system. He is encouraging me to do things like yoga and meditation.My cardiologist is good and well-meaninged, but she prescribed Midodrine and Metoprolol, which I am no longer taking. I felt like these meds were just fighting my body, not working with it. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted March 26, 2012 Author Report Share Posted March 26, 2012 wish I could somehow link what doctors helped you the most with what are your worst symptoms poll and link those to what treatments helped the most :-) Quote Link to comment Share on other sites More sharing options...
bellgirl Posted March 26, 2012 Report Share Posted March 26, 2012 Rich,I gave credit to my Dysautonomia Specialist (Cardiology), but I love my Neurologist, too, and he just prescribed Provigil for fatigue. I just started a topic on it a few days ago. It is a medication he uses for MS patients, and my ANS doctor said it would be alright to try it, and said she has used it before for other patients, as well. She may have to adjust my BB, too. It is usually given for narcolepsy, but is also supposed to be good for those with Obstructive Sleep apnea, (breathing issues), anxiety, depression and irritability, too. I will get the prescription this week, because my neurologist was out of town the day after I saw him, and let you know how it goes. Quote Link to comment Share on other sites More sharing options...
bkweavers Posted March 27, 2012 Report Share Posted March 27, 2012 My daughter had two physical therapists who I also want to give credit to for their excellent help & support. They knew nothing about POTS and they educated themselves and read the articles I gave them to come up with a treatment plan for Liz. They were the ones who first mentioned that she may need vestibular therapy. Along with the two of them, the vestibular therapist she saw was wonderful. He got her sitting up, standing, and walking again.Brenda Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted March 28, 2012 Author Report Share Posted March 28, 2012 Rich,I gave credit to my Dysautonomia Specialist (Cardiology), but I love my Neurologist, too, and he just prescribed Provigil for fatigue. I just started a topic on it a few days ago. It is a medication he uses for MS patients, and my ANS doctor said it would be alright to try it, and said she has used it before for other patients, as well. She may have to adjust my BB, too. It is usually given for narcolepsy, but is also supposed to be good for those with Obstructive Sleep apnea, (breathing issues), anxiety, depression and irritability, too. I will get the prescription this week, because my neurologist was out of town the day after I saw him, and let you know how it goes.Can you PM after a week to let me know how it works for you?TY, Rich Quote Link to comment Share on other sites More sharing options...
bellgirl Posted March 28, 2012 Report Share Posted March 28, 2012 Rich,I gave credit to my Dysautonomia Specialist (Cardiology), but I love my Neurologist, too, and he just prescribed Provigil for fatigue. I just started a topic on it a few days ago. It is a medication he uses for MS patients, and my ANS doctor said it would be alright to try it, and said she has used it before for other patients, as well. She may have to adjust my BB, too. It is usually given for narcolepsy, but is also supposed to be good for those with Obstructive Sleep apnea, (breathing issues), anxiety, depression and irritability, too. I will get the prescription this week, because my neurologist was out of town the day after I saw him, and let you know how it goes.Can you PM after a week to let me know how it works for you?TY, RichRight now they are trying to get authorization through the insurance company, so it could take a week to get it approved. It is usually used for MS patients, but my ANS doctor has prescribed it, as well for her patients. I may have to get her to prescribe it instead of the neurologist. Oh, the hoops we have to jump through...maybe I should say fall through...lol I'll let you know! Kim Quote Link to comment Share on other sites More sharing options...
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