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  1. Has anyone went to an appeal hearing without a lawyer? I tried to find a lawyer when I started the appeal process, but no one I contacted seemed interested in bothering with an SSI case dealing with an obscure condition, and I eventually gave up and sent the papers in myself. I talked to some disability advocacy group trough my health insurance, but they wouldn't touch my case since I had started the process myself. I finally got a court date this march after about 2 years of waiting, but I'm not very optimistic about my chances to say the least. They have like a decades worth of my medical records including my autonomic neuropathy diagnosis, but I'm not sure what I can get in the way of doctor's letters. I stopped seeing my pots neurologist over a year ago when they stopped taking my insurance (the only one I could find in NY to see me), and I don't think my primary even understands what an autonomic disorder is.
  2. Found this post in search, trying to see if anyone had the same reaction to b12 supplements as me, and it sounds very similar. I'm always low b12, but whenever I try supplements or injections I get the same reactions as I do from high histamine/histamine liberating foods; nightsweats, itching, insomnia, and face break outs among other things. At first I thought it was just the cheap form of b12 that is in most fortified foods and vitamins (cyanocobalamin), since it seems some people have issues with it, but I've tried methyl b12 and hydroxy b12 and I have the same reactions to all of them. Does anybody else out there have a similar response to b12, or any idea what the cause could be?
  3. The lab ordered me a test for trypsinogen (???) instead of tryptase, which I thought would have been the easiest test to get done of the batch lol but apparently not. I had stopped taking zyrtec something like 10 days before the bloodwork, and the urine tests were done a few days after that. I was still on a low-histamine diet for the tests thou, I'm not sure if I should have been intentionally trying to provoke a flare or not. I'm not taking any other antihistamines. I tried ranitidine as an h2 blocker for a like a week but it made me feel worse and my face broke out. In retrospect thou it might have been the red dye in it, which I know I react to. It seems impossible to find a dye-less OTC brand.
  4. I managed to get many of the tests (chromogranin A, histamine, n-methylhistamine, leukotrine e4, prostaglandin) run through my primary, but they all came back normal. One of the tests (heparin) came back with no result due to an error, and tryptase wasn't checked at all because the lab ordered something else with a similar name by accident. I asked my primary to reorder the tryptase but she said insurance wouldn't cover it if it wasn't ordered by a specialist (why she prescribed it the first time I don't know...). Is it worth it to see an immunologist at this point to have the tryptase checked at least, or does everything else coming back normal pretty much rule out mast cell issues? I thought I was onto something with how much zyrtec helps many of my minor issues, and my reactions to high histamine/histamine liberating foods.
  5. I've been reading up on mast cell activation disorder, and it seems like it could explain a lot of my problems, why antihistamines help me with so many little things (itching, chest pains, inflammation) despite not having any allergies, and why high histamine foods give me issues. I was going to ask my PCP for whatever testing I could have done before I rush off to an immunologist/allergist, but I'm not sure which are the important ones. Figured I might as ask here since a lot of people seem to have been diagnosed, or at least gone through testing. These are what I was looking at: -serum tryptase -n-methylhistamine 24hr urine -prostaglandin d2/f2 (what is the difference between these?) 24hr urine -leukotriene e4 24 hour urine Is there anything else I should ask for? Can a PCP even order these from a regular lab? Thanks for any help.
  6. I'm very thin but get horrible distension if there is any food/water in me at all. It's only there if I'm upright, if I lay down or even lean back it completely goes away. My heart rate also goes down by a fair amount when the distension does when I lean back, I used to think it was blood pooling, but now I think it's visceroptosis/enteroptosis When I asked my newest gastroenterologist about it he said it could be some kind of congenital muscle thing, and just told me to wear a support girdle thing, but I've tried those for a while and it makes me feel worse if anything, even if it keeps my heart rate down a bit when I'm standing. I've tried all kinds of core muscle exercises but that never does anything.
  7. Can mast cell issues cause night sweats? Or do you think that's unrelated?
  8. I don't know if it's anything to do with pots, but in recent years aspirin/ibuprofen give me night sweats every time I take them, even when I was using them topically for skin issues.
  9. I had this most of my life when lying down (in whichever ear was facing down), but it went away when my pots got bad. Anything I take to increase my blood pressure makes it come back.
  10. Nitro is sometimes administered during tilt table tests to TRIGGER a pots episode (in my case the worst I've ever had), I've never heard of it being used as a treatment.
  11. I don't know what necessarily constitutes 'medication sensitivity', but I tend to get more side effects than relief from most meds I've tried (and some vitamins even), and I've never had an issue with general anesthesia. If anything, I feel better than (my) normal after waking up, probably due to the saline IV.
  12. I did end up seeing Dr. Weimer, (the only 'pots doctor' I could find inside the state that would see me), but he wasn't helpful in my case. The 'autonomic testing laboratory' he runs at Columbia was just a tilt table in a small room, nothing I hadn't already had done by local cardiologists. He put me on a variety of medications including midodrine, mestinon, a laundry list of beta blockers, and clonazepam, but none helped any of my symptoms, some just made them worse. I thought the beta-blockers would at least help with the anxiety side of things, but no. I asked him about octreotide at a visit, since it seems to be the only medication helpful for abdominal pooling/postprandial symptoms, and he agreed to try it if the last couple of beta-blockers and clonazepam didn't help, but later changed his mind and told me he'd never actually prescribed octreotide before, didn't want to deal with it since it's only available as an injection, and to see a gastroenterologist or endocrinologist instead. Which is what I've been trying to do since with no progress. I have medicaid now (don't have a choice), and very few doctors out here are willing to accept it, even the gastro/endos I've been to in the past won't see me anymore (despite being listed as taking medicaid). The ones I managed talk to so far wanted nothing to do with treating me for autonomic problems (that they know little to nothing about) with an offlabel medication. I called Dr. Weimers office, frustrated with the situation, but the answer from his staff was that Weimer wasn't going to prescribe it, and it 'probably wouldn't help anyway'. Making appointments with random non-local endos/gastros, waiting months to see them, and simply hoping they'll be willing to prescribe octreotide is a crap shoot of the highest caliber. I mean, I'm basically going to these people and saying "Hey, I have an obscure presentation of an obscure disease outside of your specialty, want to prescribe me an offlabel, incredibly expensive, injectable medication for it? Here's my recommendation from a neurologist that doesn't even think it will work." It's completely absurd... and I have no idea how to proceed. I'm 27 already, and the only thing I've really done with my life in the past 9 years is wait for fruitless doctors appointments. Sorry for the rant, and thanks to the above posters on the information about Dr. Tullo, I'll look into it and give them a call tomorrow. His office being named the "NJ Center for Fainting" when I don't actually faint kind of scares me thou lol.
  13. I found one more doctor on the list that takes my insurance, Louis H Weimer's, but his office won't talk to me without a referral for autonomic testing from another neurologist. The last two local neurologists I've seen were clueless about autonomic issues and just told me to see a cardiologist (which I already had of coarse...). I'm really at a loss of what to do at all.
  14. Finally had someone call me back from doctor Kaufmanns office, just to tell me they won't see me because they don't think I have neurodegenerative or genetic pots (how they could even tell that before I'd even talked to them, let alone have any real testing done, I have no idea). The person I talked to recommended that I follow up my primary care doctor (who doesn't know anything about autonomic issues) and local cardiologists (which have been wholly unhelpful). I really don't know what to do, I think I ran out of doctors to even try calling...
  15. Has anyone had their cholesterol increase or red blood cell count decrease while on florinef? Both of these have always been normal for me, but after around six weeks on florinef (.1mg a day), my cholesterol came back high (I am underweight, and have close to zero cholesterol in my diet), and my red blood cell count came back low. My potassium/sodium/etc. were still normal.
  16. I called to make an appointment with Kaufmann last week, but they wanted my records and a letter from my doctor beforehand, waiting on that now.
  17. My vitamin d levels are always low unless I'm on high dose supplements. I don't feel any different when I get it up to normal thou.
  18. I tried serataline (zoloft) before I knew I had pots, and it made me much worse. It somehow made me feel 'wired' while still feeling tired and crappy, and it made my anxiety worse. The biggest thing was it exacerbated my insomnia, to the point that I couldn't sleep at all for a week straight. I was only able to sleep 3 days AFTER I had stopped taking it. I didn't know until afterwards that serataline shouldn't be prescribed to people with insomnia. In fact, the brilliant doctor who prescribed it told me it would help with my insomnia, and told me to stick with it after I called him after a few days with no sleep...
  19. My understanding was that octreotide can increase blood pressure in people with abdominal pooling. From here: http://www.dinet.org/what_helps.htm And I've seen a fare amount of positive feedback about it around these forums. I absolutely have abdominal pooling, and my symptoms after eating are the same as when standing for a long period of time. And like some others around here, I have some bizarre issue with insulin resistance. Despite being underweight, and eating a low carbohydrate diet, my insulin levels just go up and up and up unless I stay on metformin(which I have plenty of side-effects from). Octreotide also suppresses insulin and increases increases insulin sensitivity, so I figured it could help me on both fronts. Anyway, I got in touch with Dr. Stewarts office but they won't see me. I tried Mark Pecker next, but he doesn't take my insurance, althou referred me to a Horacio Kaufmann at NYU Lagone. Has anyone seen him before?
  20. I was wondering if anyone here has positive experience with any pots knowledgeable doctors in the NY area? I'm frustrated with the lack of help (and interest) from the local cardiologists and neurologists I've been seeing in long island. There are a number of pots specialists in NYC listed on this site, but I've heard negative things about a couple of them, and I'm afraid of wasting a lot of time seeing another unhelpful doctor just randomly picking a name, especially since getting to and from the city will be difficult for me. Julian Stewart seems like the most knowledgeable person in the area, but as far as I know he only treats children and young adults (I'm in my mid twenties). Nevertheless I've tried to contact him to see if he'd see me, or at least recommend another doctor if he wouldn't, but he hasn't responded to my phone calls or emails. People seem to like Svetlana Blitshteyn, but she's on the other side of the state, and getting there isn't very realistic for me. I know she also does some kind of phone consult service, have people gotten their insurance to cover that? And lastly, has anyone been prescribed octreotide in the NY area? From what I understand this medication has been extremely helpful to some pots people (more so those with abdominal pooling like I have?), but it seems not many pots specialists prescribe it (or know about it?). Thank you for any information. If there's anything you'd like to say but don't want to post publicly please PM me.
  21. I've been taking .1 mg of florinef a day for two weeks now, and (with fluid + salt loading) my standing heart rate has gone down a bit from 110-145 (usually about 125) to 95-130 or so (usually about 110), but in spite of that my orthostatic symptoms are worse. For example I was on my feet at the grocery store today for maybe 45 minutes, by the time I was at the checkout I just felt super lightheaded and awful, and I looked at my monitor and my heart rate was 95-100. Does anyone else have a similar expierience with florinef, and/or understand why this would be the case? My joint/muscle pains are also definitely worse, but I think that's an expected side effect? Drop in potassium is related to that I assume (I'm not on a supplement), and I'm going to see about getting one and getting my electrolite levels checked (they were all normal before florinef), but I'm not sure if that would make the standing lighthededness worse.
  22. I'm confused by the standing heart rate bit on the ansar. The actual numbers it gives are 87 resting and 96 standing, which I assume to be normal, but the conclusion/comment/whatever you call it says heart rate upon standing is low. If I feel my own pulse upon standing, it clearly speeds up for a moment before going back down, so I have no idea. The "low baroceptor reflex; possible parasympathetic dysfunction resulting in hypoactive response" comment is based on my deep breathing numbers seemingly being way off. It seems like my parasympathetic system being underactive could explain most, if not all of my symptoms, but I'm not sure if that even makes sense if it still manages to keep my BP/HR normal. I'll try to get a TTT done somewhere for now. I'm guessing it will come back normal, but it can't hurt.
  23. Well I'm in long island, and I've called everything in NYC on that list, as well another I found on google, and none of them take my insurance (1199 NBF). So I'm not sure of what to do aside from trying to get medicaid again. Does anyone have experience with getting these kind of visits/testing reimubursed by their insurance if the doctors don't take it? Can you have dysautonomia without orthostatic issues, and if you can, would it show up on a TTT? The ansar test only says my heart rate upon standing is "low", and nothing else as far as orthostatic stuff. I don't have any dizziness when standing/walking for long periods or anything like that. I could try to find a local cardiologist/neurologist that could atleast have a TTT done even if they aren't an autonomic expert, do you think that would be worth it in my case? And does anyone have any input on the low baroreceptor reflex/artieole dilation/low reflection index that showed on the ansar test? Outside of delayed gastric emptying, and liver enzymes coming back elevated on two occasions (but normal otherwise) those are the only abnormal testing results I've ever had for anything, and what led me to research autonomic conditions, and to this forum in the first place. One other thing I forgot to mention, but may not be related; normally I sweat very little, but occasionally I get periods of night sweats that last for days, up to like a week. Can occur even in winter. Only had this in the last 2 years or so.
  24. Would a tilt table test show anything if I don't have blood pressure/heart rate issues on any other tests (well besides the ansar, if the abnormal results I had from that are even gathered from HR/BP?)? I've had a million tests done by the cardiologist, including a 24hr holter monitor and a stress test, but they said everything is normal.
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