Quote:
Originally Posted by bny806
Limpy - I Just can't get over the similarities!!
Crazy, that you mention the sunburnt feeling - I have that exact feeling - on my palms of my hands and forearms.. a little bit on one thigh as well.. The sun or heat greatly exacerbates it... I kept telling my neuro (who honestly I am not very impressed with, but they did start IVIG on me, so I feel a little obligated to stay there, as I worry another neuro could take it away - as I dont have a firm diagnosis). I kept telling my neuro that I felt like I needed to crawl out of my own skin.. but honestly I think it was more the vibrating muscle/weakness sensation than the small fiber neuropathy, that is why they tested me..
I also notice that the more I use my hands the more that numb/sunburn sensation occurs.. very strange.
All my muscles vibrate when I am weak.. including my face.. My lips will just vibrate.. Like when I was a kid and hummed against a ballon.. it's so odd feeling..
I just don't know how they diagnose people when they are seronegative (repeititve stim I suppose, but then you have to stop IVIG to get an accurate test.. and by 2 weeks post ivig I get more like a limp noodle, can't swallow etc... so I don't think I can do that)
you have given me so much hope! Thank you!!!!
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Yep, the lip buzzing is definitely a sign for me of not enough calcium getting where it needs to go. The doctor that was overseeing the plasmapheresis thought that because my calcium levels were high, I don't need calcium. I could have all the calcium in the world, it just can't get where it needs to go.
If you ever get plasmapheresis, make sure you get at least two grams of calcium to run over the entire exchange or you will be in trouble. I am so glad that my experience has helped someone. And one more tip, if you are seronegative, DO NOT go to Emory University in Atlanta!
My first LEMS test was when I was not really very bad, just beginning to have symptoms. This last one was when I was at my worst.