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- 15
Hi all,
I guess this is just an update on my condition, and obviously a cry for help. I described my symptoms already in some previous postings (http://bit.ly/24rQsPz), but things are changing so I think an update would be good.
Well, I decided to get a second opinion in another clinic, given that in the first clinic they basically decided that I had ME/CFS, based on the fact that all exams kept coming back negative. In the new clinic they excluded ME/CFS, mainly because I do not fit Fukuda's nor the Canadian criteria (no pain, no PEM, no tender lymph nodes...). They also excluded depression. The problem is that they don't understand yet what is going on. But the good thing is that they keep trying.
So here are my symptoms: persistant, severe fatigue, burning legs (diagnosed as small fiber neuropathy), occasional cloudy urine, hot flushes caused mainly by alcohol (and some food) intake, floating stools.
The burning in the legs is really nasty, and it is probably my worst symptom, together with the fatigue. It is the first thing I feel when I wake up in the morning, and I have to get up quickly because when I move around it is more bearable.
I have been experiencing the hot flushes for a bit more than a year now. They thought of Mastocytosis or Carcinoid syndrome. But both were excluded.
Is anyone experiencing similar symptoms? Any ideas?
Thank you very much, keep fighting!
diwlo
I guess this is just an update on my condition, and obviously a cry for help. I described my symptoms already in some previous postings (http://bit.ly/24rQsPz), but things are changing so I think an update would be good.
Well, I decided to get a second opinion in another clinic, given that in the first clinic they basically decided that I had ME/CFS, based on the fact that all exams kept coming back negative. In the new clinic they excluded ME/CFS, mainly because I do not fit Fukuda's nor the Canadian criteria (no pain, no PEM, no tender lymph nodes...). They also excluded depression. The problem is that they don't understand yet what is going on. But the good thing is that they keep trying.
So here are my symptoms: persistant, severe fatigue, burning legs (diagnosed as small fiber neuropathy), occasional cloudy urine, hot flushes caused mainly by alcohol (and some food) intake, floating stools.
The burning in the legs is really nasty, and it is probably my worst symptom, together with the fatigue. It is the first thing I feel when I wake up in the morning, and I have to get up quickly because when I move around it is more bearable.
I have been experiencing the hot flushes for a bit more than a year now. They thought of Mastocytosis or Carcinoid syndrome. But both were excluded.
Is anyone experiencing similar symptoms? Any ideas?
Thank you very much, keep fighting!
diwlo