friday Posted June 20, 2006 Report Share Posted June 20, 2006 HI.I have been dealing with POTS through my CFS doc who I honestly haven't seen that much. He charges 200. bucks a pop and I just dont' have the money to see him much. anyway he's the only doc that i know that knows about POTS but he's kind of treating me for so many things we're not really focusing on the pOTS.What I would really like is a Nuerologist that knew about POTS. Or just a good doctor that had good knowledge of POTS. I have seen the links to doctors but it only lists NY and that's kind of far for me. And they definately wouldnt' take my insurance then.I was hoping someone here might have a good doc in NJ.i know it's a long shot but I thought I'd ask.I get tired of having this thing that no one will treat me for. everyone acts like it's just a matter of geting dizzy when I get up. I know there's no cure but I would really like a doctor that would actually see me specificaly for the POTS. Also if anyone knows of a chronic illness group in NJ. I know there wouldn't be a POTS group. I would gladly start one if i had the ability . Unfortunately if people are too sick to run one nothing ever gets started.Any help appreciated.Sue Quote Link to comment Share on other sites More sharing options...
Sunfish Posted June 20, 2006 Report Share Posted June 20, 2006 hopefully someone on the forum will be able to give you some ideas as there are a few from NJ, but i did check two other listings of docs (NDRF & AAS) and none of them have any NJ listings. good docs are definitely tough to come by...good luck, melissa Quote Link to comment Share on other sites More sharing options...
Guest dionna Posted June 20, 2006 Report Share Posted June 20, 2006 NIH in maryland is close to jersey. maybe you could do a study and that would definately be focusing on POTS. just a thought. they would be paying for the study i think. hope someone here can give you some better advice.dionna Quote Link to comment Share on other sites More sharing options...
Sunfish Posted June 20, 2006 Report Share Posted June 20, 2006 while i don't want to discourage anyone from applying for a study, just thought i would add the FYI that all of their studies dysautonomias are EXTREMELY backed up, i.e. i got accepted a year and a half ago and was accepted but then received a call telling me that it would be a year or more before they "might" be able to schedule me. unfortunately they have had a lot of funding cuts. they called me again this november but since i'm no longer local (i lived about an hour away in maryland until august) it changed things a bit. they now also require two trips (this didn't used to be the case)...one to "qualify" and then the study itself if accepted. not saying not to apply....just wanted to fill in a bit of info. melissa Quote Link to comment Share on other sites More sharing options...
friday Posted June 20, 2006 Author Report Share Posted June 20, 2006 hopefully someone on the forum will be able to give you some ideas as there are a few from NJ, but i did check two other listings of docs (NDRF & AAS) and none of them have any NJ listings. good docs are definitely tough to come by...good luck, melissaThanks for searching for me.sueNIH in maryland is close to jersey. maybe you could do a study and that would definately be focusing on POTS. just a thought. they would be paying for the study i think. hope someone here can give you some better advice.dionna thanks for the advice.Actually if I had to, NY is closer than Maryland. The city is around 2 hours from me. I was just looking at jersey first cause i have a hard time traveling, plus I thought maybe just maybe, my insurance might cough up a few bucks toward the visit.thanks sue Quote Link to comment Share on other sites More sharing options...
mom4cem Posted June 21, 2006 Report Share Posted June 21, 2006 Hi,I don't know of any docs in NJ but I do hope you find one. I live in NY but from what I researched many of the ones in NY have limitations to who they accept. I'd be interested if you get any info for NJ. I much rather prefer to see someone through word of mouth from someone who has seen a dr. Quote Link to comment Share on other sites More sharing options...
friday Posted June 21, 2006 Author Report Share Posted June 21, 2006 Hi,I don't know of any docs in NJ but I do hope you find one. I live in NY but from what I researched many of the ones in NY have limitations to who they accept. I'd be interested if you get any info for NJ. I much rather prefer to see someone through word of mouth from someone who has seen a dr. what do you mean by limitations? Are you happy with your current doc? I'd like also to see someone who someone else reccomends. I would consider traveling to NY, if someone said they had a good doc there.sue Quote Link to comment Share on other sites More sharing options...
mom4cem Posted June 21, 2006 Report Share Posted June 21, 2006 Two deal with pediatric dysautonomia and two others dealt with familial dysautonomia only. At least that is what I read. I have not heard of anyone in particular recommonded except for Dr. Stewart who sees pediatrics. Heard is a great doc but I am long since out of the pediatric stage..lol.. Quote Link to comment Share on other sites More sharing options...
Eillyre Posted June 21, 2006 Report Share Posted June 21, 2006 Hi Sue!I'm another NJ POTSy so I understand your situation. We looked very hard for a POTS specialist (even someone who just knew about it) here in NJ, but we came up with nothing. The one neuro that we knew of who had any experience with POTS (which was limited) has moved away. We looked primarily in central NJ because that's where we live, but had trouble finding anyone north or south, too. I ended up opting to go out to Mayo MN to see Dr. Low when the electrophysiologist I saw at UPenn (who did have some POTS patients) recommended going to a research hospital -- he said he didn't know of anyone in NJ who would be able to help me. Dr. Low didn't have any recommendations for POTS doctors in NJ either.At this point, I only see my CFS doctor (who is aware of POTS but not extensively educated in it) -- she was willing to go ahead with any of Dr. Low's suggestions. It's SO nice that she has no ego problems to get in the way of our arrangement! I think your best bet is to look outside of NJ. Good luck! Feel free to PM me if you want to chat about it!Angela Quote Link to comment Share on other sites More sharing options...
Eillyre Posted June 21, 2006 Report Share Posted June 21, 2006 It's me again!About the support group...like you said I think you'll be hard-pressed to find a POTS-specific group unless through this forum. However, I did a basic web search under "chronic illness support group in NJ" (without qutation marks) and came up with a number of possibilities. Some were CFS-specific while others were more all-encompassing. You may be able to find something close to home that way. If that isn't helpful, you might try asking someone in your township social services department or local hospital if they know of any chronic illness support groups. I spoke with the woman directing South Brunswick's food pantry & assorted social services at one point (she was simply fascinated by POTS) who was interested in starting or finding some sort of support group that I could go to; I was really too sick to attend any meetings out-of-home at the time so nothing really came of that suggestion. Let me know if I can help!Angela Quote Link to comment Share on other sites More sharing options...
yogini Posted June 21, 2006 Report Share Posted June 21, 2006 Hi,I live in NYC. I agree with mom4cem. I've seen or contacted several of the doctors listed under NY. I have found that they are unavailable (relocated, not accepting new patients), don't know enough about POTS, etc. So unfortunately I don't have anyone to recommend. Like Angela, I also went to Mayo a few years ago, but they do not help with ongoing care. I am managing right now through my cardiologist, who doesn't know much about POTS but at least writes my prescription. If things got worse, I would try Dr. Grubb or go back to Mayo. I did find this old post which might be helpful to you:http://dinet.ipbhost.com/index.php?showtopic=617&hl=nj Quote Link to comment Share on other sites More sharing options...
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