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  1. Bebe, I don't know if this is possible with you, but if your daughter has POTS type symptoms, you might see if a pediatric cardio will diagnose you. I am in my 50s and got dxed by a pediatric cardiologist, the whole nine yards and found out I had HyperPOTS. It turned out the doctor had an office less than a mile from my house the entire time. So you never know where the help will come. Sometimes when a door is slammed, another one opens....
  2. so sorry to hear of your bad experience. My experiences are very much like yours. I vomited for a year. Lost 60 lbs initially then kind of stabilized, losing and gaining the same 5-10 lbs every week ever since. Oh I went hither and yon, many tests, even to a top esophageal guy two states away. He did the rumination protocol (not even sure what the protocol was, though I know what rumination is, nope that's not the problem). In the end he said, have you tried Zofran? Five months of hundred mile trips for tests and that was the big answer. Plus I'm allergic to zofran, and already had drawers full of every anti-emitic, antidepressant, lyrica, cymbalta, topamax, on and on. Nothing helped, not even a cocktail of meds which included valium. Couldn't keep down water even, and the gastros looked at me like I was nuts when I asked for fluids so I went around to the hospitals every week to get rehydrated. Man, oh man, awful. Begged for a PICC just to not be dehydrated, but didn't get it until my POTS went crazy. Eventually my cardio put me on a clonidine patch and it *sort of* settled down, but still have days at least once a week, when I vomit all day for no apparent reason. I carry the emesis bags in my purse on the rare trips to the doctor's and never leave the house anymore. No one wants to be around a barfer... Doesn't seem to be positional. Like POTS in general, it seems to have no discernable pattern at all. Even had the nerve biopsies on the leg -- the nerves in the leg have some similarity to the stomach nerves I was told.... do you always have nausea? mine has always been "surprise!" vomit, no warning at all beyond a split second. Keep us up to date. It's not at all easy to go through.
  3. Update: My cardio called Mayo Rochester to confirm the age cutoff. They did tell him I was over 50 so it's not possible for me to be seen in the POTS clinic there. This is NEW they told him. I can't say who exactly he talked to, just know that he called and told me he spent an hour on the phone. He called me back the afternoon he talked to Mayo. To clarify: I am not disparaging a Medical System. I can't change whtat was told to my doc and to me. It is what it is. I am jsut trying to get advice. Mayo told my doc that I MIGHT get autonomic testing re-done, they acknowledged taht they have all of my previous tests in hand and that they were reviewed by an medical team (though they did not tell my cardio what the specialty of the reviewing team was so there's a question there), but told HIM that their new focus in the POTS clinic is on patients under the age of 50. It is totally up to the descretion of the ONE doctor I will see, again, THEIR words, not mine or my doc's. That does not mean that the doctor I see will not refer me for autonomic testing, only that their focus will be my heart rhythms, which baffles my doc as the heart rhythms and function aren't thoguht to be a problem. My doc beleives since the noradrenaline levels were over 1950 that Mayo would see a published paper out of a case like mine. He is no slouch on my case, but his knowledge is limited because he is a pediatrician. He advocated for me as "an outlier needing a tretment plan for hyperPOTS" his words not mine. BTW I have had the sweat gland biopsy done already, but not the other sweat test I have seen others refer to, but have many other tests from Hopkins and George Washington and a few at Georgetown. Maybe I have so many tests in hand already that AI tsting would be redudant? That 's what wer'er hopig at this point. For those who are wondering about hte referral vs. self-referral at Mayo, I'll just give you my experience. My cardio has sent over a dozen patients, all teenagers to Mayo in the past two years. They all self referred. You call, and they conect with a scheduler who asssigns a "temporary Mayo patient number" to you and you label all your records with taht number and fax them. Vanderbilt requires taht you r doctor call then fax a kind of worksheet/intake for your case then they contatct you, the patient and you fax the rest of the records to them. I don't know if this is typical, this is just what they had me do. Again, I simply googled "Mayo Rochester POTS" and found the number the day my cardio told me too and that's how it happened. If that is different from everyone esle I don't know how to explain it. I'm not being critical, I'm just recounting how it happened. My cardio has masde the first steps for Vanderbilt and we are going to make the trip to Mayo. My cardio hopes that when they see me, they'll see just how unusual I am and go from there. He thinks it's a gamble but worht it. The wild card here is that my neuro symptoms are much worse recently. I have had vertigo for a month, but it is not vestibulitis or anything similar. Alos am typong slow ly because my left arm is now limp, and the bones inside it hurt. Mast? My pain doc thinks so, but prostaglandin D2 and urine methylhistamine tests still pending... Thanks to all fro your issights adn help. excuse the typos.
  4. My cardio told me to call Mayo's POTS clinic, they asked me to fax all my records which took me a whole day to collect. I scanned and faxed them, everything including the ancillary tests and results (CVID, ICTD, etc). They told me they would review them, the lady told me to call every week which i did. They kept tellling me 6-8 months, then 8-10 months then the news that I was too old for AD eval.... They didn't ask for a referral from my doc, jsut the records from everyone. When I asked why wasn't I informed of the age cut off, she said it was new, that POTS was a young person's disorder, I probably had been misdiagnosed...I asked did they actually see my noradrenaline levels, catacholamine levels, QSART, on and on. She said maybe I should go to Vanderbilt, but didn't say I COULDN"T come to Mayo, jsut that they were going to evaluate my heart rhythms, which have been determined to be normal. Told me that I would wear the holter for a day, "doing my normal activities" (I said, "laying in bed and vomiting, going to the loo?") and then on Wednesday I would see the doctor and be cut loose on Friday.... so frustrating. I see all of you all's troubles getting misdiagnosed and all, but I can't think what's left to be misdiagnosed...do noradrenaline levels lie? I've seen 7 or is it 8 endocrinologists at the big teaching hospitals and they run all manner of tests but only the ones my dxing cardio did were orthostatic tests. Standing bloodwork and urine, supine bloodwork and urine and so on...
  5. I was misdiagnosed as bipolar/anxiety disorder after my son was born in 1990. I kept describing how my heart was racing, felt faint etc. the usual POTS symptoms. When I got sick last year (we didn't know I had an immune deficiency then, CVID, bc my primary said that my saying i had chicken pox twice as a child was 'ludicrous") my treating doctors told me to get off all my psychiatric meds. I did no problem. Surprise, months later I was still totally asymptomatic for anxiety and bipolar. The psychiatrist I was seeing had not dxed me, I was living somewhere else at age 31. My husband had maintained for years that it was a misDX. But the benzos seemed to help with the cardiac symptoms and the other things helped a little with the brain fog. I never considered that I was unusual in anyway (connective tissue disorder not identified until last fall, never knew being so bendy was 'different' can put my foot around my neck, etc had nephews and first cousins with Marfan's, but I got osteoarthritis and osteoporosis so young that no one ever asked if I could do my parlor tricks..) so I never said, hey watch this...so no one considered ANYTHING beyond psych diagnoses. I just kept going around and around for two decades+. I was sick all the time, strep 10-15 times a year, yeast overgrowth the same. I had all these weird injuries and docs would write "trauma" and I'd cross it out and say, no truama!! Finally a doc in my pain doc's office asked when was I dxed with EDS? I said what in the heck is that? That was the first domino. I've been worked up for so many other things, you all can't imagine. My sons and husband took me to sometimes 10 doctors a week last year trying to find out why I was vomiting, all the way to Hopkins over and over and nothing to show for it. Getting horizontal 24/7 ended my 60+ lb weight loss at last. It's been awful. It was only after the CVID dx last fall that things started moving away from psych dxs. Saw the geneticist in Balto the same week.... The mast won't be a surprise either bc I have always had "low-flying" allergies. Didn't show in blood, but showed on skin, "oh that's dermatitis.." so on. I had been on the z/z for literally years but was bullied off of it..now I'm back on while I wait for the ketotifen to come...I kept saying to docs, "I keep blacking out" but my brother had died of brain cancer so they CTed my head over and over (lots of nice contrast). Honestly, having lost only a year I know is mild compared to what many of you have gone through. It's not so much getting "re-diagnosed" that is my priority. It is getting a treatment plan. There is no autonomic function doctor around DC where I live that is not a pediatrician. My doc knows them all, but he's at a loss about how to try and get me upright, "among the bipeds." We don't know why but midodrine didn't work on me, and the compression stockings make my small fiber neuropathy worse (years on statins gave me diabetes, the diabetes gave me the neuropathy? not sure. Went off the statins, blood sugar normalized...) If I'm upright for even 5 mins over I go, so we take me to docs in our tricked out, keep me horizontal van. We keep adapting, but I never see improvement. My doc thought that Mayo would try and unwind the theads of my disorders. He spends (he told us) about five hours a week combing through my records, looking for anything that matches anything in the existing literature. He thought that Mayo being all about research as well, would just LOVE to get their hands on an outlier like me. But I am an outlier even among outlier's diseases/disorders. My doc said he will try to call, but how long can I expect him to keep advocating on my behalf when no one wants to even evaluate me? I've been blown off by some of the biggest names in the country. You all would be shocked I think if I told my whole story.... My last remaining doctors were concerned about me making the trip to Mayo even bc of the distance, bc I end up in the pain doc's office every time we go to Balto! So how was I going to make the drive to Rochester? Husband's plan was to rent a Winnebago to make the drive....so as wonderful as Wisconsin sounds it would be even further. Vandy is closer by a little. Sorry sorry to run on like this. I don't get to "talk" very often...
  6. BTW, maybe some one can confirm this, but DH found online that Dr. Grubb has a serious family illness he's dealing with and is pretty much not seeing patients currently and for some time, so his waiting list is at a standstill. My own pediatric cardio knows him and told me not to hope for Dr. Grubb.
  7. they told me the cut off at 50 is new. Yes, had catecholamines, everything done by my pediatric POTS doc. But the clincher for mayo it seems was the dubious Holter monitor. I was really surprised that my explanation for why it looked odd meant nothing to them. They're convinced I have a heart rhythm problem, but none has been seen through my two cardios ever ever. I wear the wrist monitor day and night (in bed all the time anyway) and record my BP heart rate every 15 mins! Nothing odd as long as the clonidine patch is on. They warned me when I made my initial call that all they do is confirm dx. But I was very surprised that the woman who called made such a remark as "oh you probably don't even have POTS, lots of people think they do, but they don't." I've been though endocrinology at all of the major teaching hospitals around here for a different explanation for the super high catacholamines, noradrenaline etc, the things typical of hyperPOTS and keep getting sent back to my cardiologists (I have the POTS one, a pediatric, and the regular one who said, this is POTS a year+ ago...frustrating.
  8. I already did JH bc they are within 100 miles of me. I didn't find the help I needed there. Vanderbilt next on my list. Heard that the best doc from Cleveland Clinic is now part of Sentara Hopstial system and in Norfolk VA. Called and the wait now 14 months....argh. They jsut got up and running recently appartently.
  9. This is my first post, so bear with me. I got dxed with hyperPOTS (noradrenaline standing measured 1950!!) this past January. I went through the mill trying to be dxed SOMEWHERE, all the major teaching hospitals in the mid-atlantic. One hospital told me, "oh even marines can be POTSY, it's no big deal..." So found a local (less than a half mile from home) pediatric cardiologist who did the TTT, QSART, extensive bloodwork and has tried me on all the usual POTS meds. So far the only thing that helps a LITTLE is the clonidine patch. I have awful polyuria, vertigo, dizziness, vomiting, plus all the mast cell symptoms. (going to need to see Dr. Afrin I was told for that). But my triglyerides are over 800+. Started Lovaza three months ago no response (I used to take statins, tricor etc, but I'm one of those people who end up with Diabetes and muscle knots on those drugs, learned the hard way for ten years). Saw seven different endocrinolists for the hi-tris, poss Diabetes Insipidus, thyroid probs, got nothing. POTS symptoms not even sort of under control except BP/HR....Finally, my cardio pulled the trigger, said Mayo Rochester, go. Mayo called two days ago giving me an appt in July way ahead of what we expected. However==They said you're too old for autonomic dysfunction evaluation, so we're going to put you in a holter monitior when you arrive, and you'll be seen in the heart rhythm clinic. I told them that my cardio's holter monitor's leads had not been put on properly and that two of them had come off and I kept trying to tape them on, but it didn't work and so the Holter results were not accurate, that my BP and HR are no totally controlled by my baby dose of clonidine but that I am bedbound for a year + now bc of POTS symptoms. Their reply, "the cut off is 50 for AD eval, and you're 53, sorry". But here I am with hyperPOTS, noradrenaline over 3x the diagnostic criteria and everything else in the bloodwork, and I do have hyperPOTS even at 53! I was misdiagnosed for 22 years!! So are there any of you who are "OLD" like me? Has this happened to any one else? I called Vanderbilt and they said yes, my doc could make the call, etc, that no THEY don't have an age limit but it would require multiple trips to the center etc and I needed to be aware of that, and their waiting list is over a year.... Advice? Experiences? Help? HELP!!
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