BustersMom

Hi Everyone - I posted here once several months ago, but I would like to intro myself & tell you how relieved I am to have found this website. I can't believe all of the info & how complex all of this stuff is now that I've read many of your posts. Wow. I've been ill for 7+ years, progressively. It took me 6+ years to finally figure out that something neuro might be happening.... feels like I'm back at square 1, but it's a start. I don't have "POTS" & my TTT was basically normal, but have many other dysautonomia symptoms, and finally made it to Cleveland Clinic 2x in the past few months for tests. My most disabling symptoms are heart arrythmias & tachy, dizziness, pain, shortness of breath, anxiety, and not being able to sweat at all, ever. I had a QSART, which indicated near anhidrosis (SFN, suggestive of autonomic neuropathy, per the neuro). Finally, I felt like I was getting some validation, ya know ? Then I had the TST. They covered me in powder - and it turned deep purple after 10 mins, which shocked me. I was bone dry, yet the powder changed color. Therefore the neuro stated that I have a "normal hidrosis pattern". I was just so upset I cried, because I know I can't sweat, and don't sweat. Can anyone help shed some light on this ? ****************************************************************** Note - I didn't put any lotion on the day of the test (it was at 7:30am), but i did put some on the day before (pretty thick stuff.. and didn't shower before the test. I suggested that as a possible issue, and they said "no, that would actually cause a false positive".. which is not true, per documentation I found in a book written by Mayo Neuro team. ******************************************************************* Thanks so much for your help. Julie

Hi everyone, I am new to the forum, and am so grateful to have found you guys (although I"m not happy that there are so many of us suffering). I have an appointment with Dr. Gilden at the end of March. I was told "arrive at 7am, don't eat anything, and plan to spend the whole day here". I had many questions, managed to get a few in, but I could tell that the office was crazy busy & could hear the phones ringing off the hook. So - I felt kind of bad keeping the Office Manager on the phone at the time. I know that some of you have seen Dr. GIlden (or other MD's) and am just curious as to what types of tests I can plan on. A brief bit about me: About 7 years ago I stopped sweating completely, and then the heart arrythmia/tachycardia began, and has worsened over time. Since then I have added a multitude of symptoms including pain, dizziness, nausea, blood pooling in calves/feet when sitting, blurred vision, severe anxiety/panic attacks, huge leg rashes, .. and too much more to list. I have autoimmune thyroiditis (anti-thyroid antibodies are very elevated), and am a 2x cancer survivor (last tx completed in 4/2010). I've had a couple of vasovagal episodes, but don't seem to have actual postural BP issues. I had a Q-Sweat test which confirmed that I don't sweat at all, and a recent oral biopsy showed connective tissue inflammation. I'm ANA positive.. and so far, that's about all I got. A doc tried a TTT back in 2006, but I refused the injection to raise my heart rate.. so he said it was an unsuccessful test. Sorry this was so long, I just thought some of this info might help in answering my question (and to just share a bit about myself too). Glad to "meet" everyone here.... Cheers, Julie