SarahA33 Posted September 9, 2013 Author Report Share Posted September 9, 2013 No! Absolutely not.Here is who I would reccomend that you do some research on:Dr. Amer SulemanThe Heartbeat Clinic7777 Forest Lane Suite A 236 Dallas, Texas 75230 972-566-4327POTS, NCSAutonomic LaboratoryDr. Suleman is an electrophysiologist with a special interest in dysautonomias. Quote Link to comment Share on other sites More sharing options...
okiedokie123 Posted September 9, 2013 Report Share Posted September 9, 2013 No! Absolutely not.Here is who I would reccomend that you do some research on:Dr. Amer SulemanThe Heartbeat Clinic7777 Forest Lane Suite A 236 Dallas, Texas 75230 972-566-4327POTS, NCSAutonomic LaboratoryDr. Suleman is an electrophysiologist with a special interest in dysautonomias.Now that's a specialist! Thanks Sarah. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted September 10, 2013 Author Report Share Posted September 10, 2013 Your welcome Okie!I hope If you decide to see this doctor that you can get in fairly quickly. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted October 4, 2013 Report Share Posted October 4, 2013 (edited) Hi Sarah, Welcome to the group! I have hyperPots and Orthostatic Hypotension. Is that what you have? I tried Mestinon and Florinef without and relief. i also have all sorts of breathing issues breathing. beta blockers made them worse. I have Clonidine but I wont take it until I get the hypotension stabilized.When I get a hypertensive crises I chug water slowly so that I can pee out the NE. I also take antihistamines and olive leaf extract both lower BP slightly.Keep in mind all POTS meds are bandaids they don't treat the cause. The first thing I think any Dysautonomia person may want to do is get a sweat gland nerve fiber density skin biopsy. Its painless and take 5 min. Neuros usually do it but any doctor can order a kit and do it in their office. That will say the extent of their autonomic sympathetic post ganglia nerve damage. If they can't get that they may want to try to get a QSART, even though it's much less sensitive.Then in my opinion people may want to get their doctors to order the Mayo Clinic Paraneoplastic panel. And try find top Rheumatologist, not local random ones, to look deeper at autoimmune causes. Blood is only positive in 50% of all autoimmune disease so do not rest because a dr says you dont have it when all they did was a blood test. Usually scans and biopsies are needed to really rule them out.It took me a year and a half to find out I have Sjogren's Syndrom an autoimmune disease. There is a group of 40 of us with POTS and Sjogren's in a group on facebook. I run a group on facebook with POTS and autoimmune disease and I have around 70 members so far in that group.The best way to knock pots into remission it to treat the underlying cause. It's not only autoimmune for example people with diabetes have it but I believe most have autoimmune disease. Also triggers are not the same as actual underlying causes.Rich Edited October 4, 2013 by corina medical advice Quote Link to comment Share on other sites More sharing options...
Joann Posted October 5, 2013 Report Share Posted October 5, 2013 Rich, I had the QSART test and it came out fine, so I might need to ask for a biopsy instead. Sorry don't want to take over someone else's post but I am sure others are interested in this too. I thought the QSART was the big test, so I wasn't aware of this biopsy test. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted October 5, 2013 Author Report Share Posted October 5, 2013 Thanks for the Advice Rich.I appreciate you taking the time out to let me know what to look for in the autoimmune arena, it's the one specialty I've never consulted in. I think in the future it would be a great option for me. Truthfully, and I know this sounds like im lazy, but i'm not.. im just so tired of doctors and appointments and tests. Ive been doing fairly well and steadily making improvements .Sarah Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted October 7, 2013 Report Share Posted October 7, 2013 I have to try not to give medical advice because sometimes I forget I'm not a doctors. So I will just say that the skin biopsy is 80% more sensative in picking up a sweat gland autonomic neuropathy vs. 55% with the QSART. The QSART is better at picking up length dependant neuropathies because the skin biopsy is only done on the legs and the QSART can be done anywhere. Also the nerves in our odies are always trying to regrow and regenerate so at any one time there can be a flucuation. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted October 7, 2013 Report Share Posted October 7, 2013 Sarah, I had to learn a lesson the hard way. I first got sick in 2006 and then went in to remission after 6 months. I forgot I was ever sick for 4 years and then bam it came back much worse. Everyone should learn from that, that we can't pretend like we have no causes because they can be silently building up. Knowledge is power. It took me over a year to know I had autonomic neuropathy, then another 6 months to know I had Sjogren's and now soon after 2 years finally getting evaluated for vasculitis. If I do have vasculitis and if I ignored it and left it untreated it could actually kill me if it went into the necrotizing phase. Doctors and tests are annoying but we have to be our own advocates and keep pushing for answers. Idiopathic is not an answer. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted October 8, 2013 Author Report Share Posted October 8, 2013 Hey Rich,I think I misspoke or there has been a misunderstanding. I actively am dealing with my illness on a daily basis. I'm in no way in remission, however, I am improving now that I've been correctly diagnosed and given the proper medical treatment. I have been relentless in fighting to figure out what has been going on for 7 years and am exhausted at this point. I'm sure majority of people understand where I am coming from. I need a break from the 30+ doctors I've seen. I actually just started counseling for chronic illness to learn how to manage the psychological and emotional toll this has all taken on me and I'm already drained. I'm really glad to hear that you continued to fight for yourself and I completely agree that we have to be our own biggest advocates Quote Link to comment Share on other sites More sharing options...
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