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What would you do if you had a undiagnosed condition with constant 24/7 leg pain, twitching, and like you can't stand? It's been going on a YEAR, no relief. No med helps. It is my sister who is experiencing this. She feels now almost a mental breakdown from having NO doctor help her. The pain never stops, and she feels PTSD, depression, depersonalization, and almost catatonic now. She cannot decide what she can or cannot do minute to minute. She feels a vegetable and 'can't take it' anymore :/ She has been in two psych wards b/c she wanted to end her life, but the stay didn't help. (they only 'monitor' you for a bit) Is this an Emergency? Doctors have said 'I don't know what to say.' o.O I find it so SAD they can't even get a team for her to figure out WHAT this pain is??? All neurological tests have been negative. Not sure what to do from here on now. It is heartbreaking watching her cry , and be beyond depressed from this condition.
36-40, F
40 replies
May 19, 2019
Edited: 1 yr ago
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Lucia · 31-35, T
I'd work on solving it if it was my sibling. Doctors can be great, but sometimes they need to get an answer painted in a picture infront of them before they'll listen.

First step is to find out who else has this. What is the root of the pain and twitching. Second step is to find out how it triggered and under what circumstances.

It may be turn out to be impossible to find out. But hope that someone who has this, and won over it, is out there is really all you have if the doctors can't figure it out.
Coralmist · 36-40, F
[@621205,Lucia] I found a blog months ago about a few people who have what she has.. twitching and leg pain with NO diagnosis. They also had every test come back negative, and for one guy, his twitching stopped abruptly after a year of it daily. (but it did come back) I cannot find that blog again :( But that is what I'm working on now, finding others who may have experienced this.. thanks Lucia

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