Raisin Posted January 16, 2014 Report Share Posted January 16, 2014 Hi everyone! I have fairly recently been diagnosed with Pots and we (the docs and I) are searching further to see just what else may be going on as well. I have been run through the autonomic ringer of tests. Positive TTT with mild OH and EKG changes(30 day monitor since shows only PVC's and PAC's....no biggie) , normal Valsalva, 40% blood pooling in legs just upon sitting up (not even standing! Lol), 10% hypovolemia, and most recently I completed the TST whereby I stayed completely orange until my internal temp got up to 102 and then I had some purple patches on my belly and upper chest and forehead. My Dysautonomia doc had said that if I did not sweat enough in the TST, he would like me to have a nerve biopsy next. I tested negative for ED, Myasthenia Gravis and fine B-12. I have trouble with balance and use a cane and have really struggled with nausea and get out of breath sometimes. I also have had migraines my whole life and was recently hospitalized when I began slurring my words and my left leg stopped working which they said was probably a migraine related TIA (can't say I ever had a migraine like that before!) which lasted five days. I sometimes notice also now that my speech "slows down" but this seems to just go away on its own. I guess I am getting nervous because I wonder where I am heading, eh? Hubby for whatever reason doesn't seem to be able to be supportive or at least not in the way I feel I need at the moment. Has anyone else had a nerve biopsy? I don't know what that is like. I'm fairly sure they will also look for autoimmune causes maybe? Is that done with blood tests? I am trying to increase salt and fluids and I am taking Metropolol and Midodring which are somewhat helpful. Any help is appreciated! Thanks! Quote Link to comment Share on other sites More sharing options...
gjensen Posted January 16, 2014 Report Share Posted January 16, 2014 I am no real help., but I have had a nerve biopsy. They took four very small skin samples. Two near my ankle, and two near my hip. It was relatively painless after a couple numbing shots. I imagine that you will be getting a battery of auto immune tests done. How long have you been symptomatic? Quote Link to comment Share on other sites More sharing options...
Raisin Posted January 17, 2014 Author Report Share Posted January 17, 2014 Oh thank you gjenson! I had no idea what they do for a nerve biopsy. Did they do yours in the office then? I have had the nausea since July of 2012 I believe. It was 5 days before a surgery to take out my appendix and I just thought perhaps I was nervous or that the appendix was causing the nausea. But, the nausea never went away! I, like so many others, went from one doc to another and test after test to no avail until i met a fabulous neurologist who has been a life saver! I did read that all this can be caused by an autoimmune disorder. I am assuming that the tests for that are just drawing a huge amount of blood?...looking for all the antibodies, etc.? Quote Link to comment Share on other sites More sharing options...
srb Posted January 17, 2014 Report Share Posted January 17, 2014 Hi Raisin and welcome from another newbie. So sorry to hear about all that you have gone through. You have had far more testing than I have so I guess I'm not much help there! I had very slurred and then slow speech after my initial VVS episode and was very scary. Quote Link to comment Share on other sites More sharing options...
Raisin Posted January 19, 2014 Author Report Share Posted January 19, 2014 Thanks for the welcome srb! Yes, I do feel blessed to be in a city where all this testing is available. (Cleveland Clinic). I'm sure that this will iron itself out in the long run. Yes, the slow and slurred speech is very odd, isn't it? I know I am doing it but I can't stop doing it. I start actually analyzing it when it happens...as if from a third party observer! LolI sure hope all of us the best. Quote Link to comment Share on other sites More sharing options...
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