Exploring ALS Journey from Russia

[ladywitch]

Dear twichers, First of all, I am sorry for my poor english (I am an austrian), so please be leniant toward me.It all started a few years agoo, while I met some bloke in the transsibirian while I was travelling through russia. I had been suffering a tremor quite a long time while I met this guy in the train, who told me that he is suffering from als. Two years later, (in august 09) I developed muscle twiching in my calves. In the first months I was'nt scared at all, I thought I might had some magnesium problems. After one month I started to google my symptoms= big mistake! I went to a neurologist who told me everething is fine (altough he send me to another doctor which had an emg). Beeing aware of maybe suffering from a** I, I had the most terrible time of my life. Long speech, short story; the emg went out fine, I should not be worried. In november I was running the nyc marathon. Altough I had been worried to death, I achieved a good time, but problems did not increased, they started to grow. A month later I wasn't able to live my everyday life. I had been so in my fears that I went to a doctor to give me some antidepressive. I told him my story and he reassured me to make some test to get rid of that *beep* we are all suffering. Then the twiches started in my arms as well, I nearly went crazy. At the first glimps the test of borreliosis was positiv, so I really felt relieved. But then my doctor told me that he was wrong. At this night I really thought that I couldn't stand it anymore. I developed twiches in my hands (between my thump and index finger), in my lips, I had numbness in my left leg, I was twiching in my arms, and in my eyelids The good thing is, that most of these twiches went away. I still got it in my legs and arms. Of course I surched my body for dents, and of course I found some. Today I feel better, although Iam still worried. The only thing that I wanted to tell you is, that I am one of you, and I appreciate this forum.Best regards to all you people suffering,Ulrich

 

[AussieSurvivor]

Ulrich. From all that you describe along with your negative testing, it says to me that is most likely BFS. I have a lot of what you say, but you must remember every BFSer can have slightly different symptoms ie less or more twitching in many different places. Some have cramping, tremors,numbness, hyper-sensitivity etc etc- all symptoms of BFS. As has been said many a times on this board ( Carlos is always saying it!) with most of the 'nasties', twitching is the last thing you notice. weakness is first, REAL weakness not perceived weakness. I think you are 'fine'. I can feel your anxiety through your post, you need to ge that under control-priority one!regardsRodger