RHODEO

Hey everyone, I am curious if you've had an eeg, evoked potentials test, and a spine MRI to rule out other conditions? If so, can you tell me the conditions they were trying to rule out? I ask because I have been asking my neuro. if he will order these tests for me and he "doesn't think that's necessary". From all of the research I've done it seems like these are required to rule out other things. I can't understand why he is so reluctant to order these tests! I have struggled throughout this whole process of figuring out what is wrong with me to get docs to order tests!!! It doesn't seem right that I should have to BEG them for tests! Thanks, Jen

Has anyone tried this and had success? Thanks. Jen

This is interesting. I checked MT Sinai's website and they don't even have anything indicating they treat Autonomic problems. Am I missing something?

Does anyone have recommendations on a SSRI?

Has anyone ever tried Pindolol?

So my pcp had me see Neurologist here in VT. I did today. I again feel so disappointed He made me feel like I am overreacting to my symptoms and said everyone can feel like they have Autonomic problems if they think about it. He thinks its one big joke. He thinks people who complain about Autonomic problems are dramatic. How can he say this? This is not in my head. I begged him to send me to Mayo since I have not had Autonomic tsting. He said I should have my pcp take care of it. I said she is relying on YOU to do it and he said he'd refer me to MT Sinai. He said they are more highly regarded. Anyone hear anything about it? How about anywhere in Boston? I am desperate. I am sorry to complain on here, BUT I feel so lonely and sick and I am not sure how to handle it and how to help myself. Thanks again.

Thanks for your responses To answer AJW4055, For the PAC's and PVC's- how many and how frequent? The PVC's and PAC's happen several times everyday. Are you under the care of an erlectophysiologist? (cardiologist) Yes. He said TTT's are unnecessary and should never be given. :/ Argh. This is not correct. How are your drs. not helping? As in not listening or believing, or not having found the right treatment? They have never heard about POTS. Did the prescribe all the meds you listed on your original post? You haven't tried any of them yet? Or they didn't work? Yes. They prescribed those meds and I haven't taken them since I don't trust my docs. They have never heard about POTS. Currently what are the major symptoms that you experience? Nausea, Arrhythmia's, Tachycardia on standing, Stomach sensitivities, Acid reflu, Syncope, Lo b pressure, Muscle pain, Fasciculations, Fatigue, Dizziness, Lightheadedness, Incontinence, Unable to tolerate hot and cold, Pain, Arthritis, Ringing in ears, and much more. Are you taking any meds? Not currently What testing have you had done? Are you just looking for a neurologist or other drs as well? I have had an EMG and NCS, colonoscopy, Echo, EKG. Hlter monitors, ENG, Brain MRI, Utrasound upper right quadrant, labs, Stress tst,. I am looking for a doc team. Docs understanding autonomic problems. Thanks again. If you have any advice I'd be happy to hear.

Thanks for your responses. I asked my primary doc today if she'd phone Mayo for me like Mayo suggested. She said she feels uneasy about it and said I should see my neurologist and have him call them. She said she'd like to have him do it since he is a neurologist.This is really ridiculous. I asked her if she has ever heard about "POTS" and she said no. Should I see another primary doc? I am very annoyed.

Hey Joe. I heard it takes a very long time to get in there. Let me know how and if you go about this as I am very interested in going as well. I live in VT and there aren't any docs here specializing in POTS. I am desperate for a doc to understand.

I'd love to come to Bo! I lived there for 7 years while I studied in college. I am desperate for help. I need a neurologist who understands POTS. I have said POTS to docs here in VT and I receive looks like I am crazy. I don't think they have ever heard about anyone having it. It is very strange. I guess because I live in a small state the medical care is not as up to speed? Can you give me recommendations on who I should call? Thanks so much. I really feel lonely. I haven't been able to work in 7 mo's. I am in bad shape. I am not sure if I should take meds they give me.

Does anyone have recommendations? My primary care made a referral for me to go to Mayo and I received a note in the mail saying it has been rejected. Any ideas why they would reject it and any ideas on how I can get them to approve? The lady on the phone said I should have my primary care doc phone Mayo's Neurology Dep and speak w them directly. Does this make sense? I am very disappointed. I need to be seen by someone who has knowledge about POTS. Thanks for hearing me Jen

Hi. I have some questions. I am 31 and I think I have POTS. I haven't been diagnosed (long story) BUT I have been feeling like crap for a year longer actually and I feel so depressed. To make a long story short, they don't do TTT here in VT. Very incompetent. I have been bounced around from docs and meds. I have been diagnosed having syncope, PAC's, PVC's, SVT's, IST's, small fiber neuropathy, IBS, GERD, Fibromyalgia, incomplete badder emptying, fasciculations, low b pressure, neuritis in ear, vascular constriction, Raynauds, polyp on gallbladder, migraines, fibroids, arthritis, and more. I feel like my docs are not helping. I am feeling very lonely and scared. Docs have given me so many drugs and I haven't taken any. Should I try Prednisone? Zofran? Florinef? Hydroychloroquine? Valium? SSRI's? Pain med? Thanks.