New here and need support!

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New here and need support!

Postby iza on May 17th, 2015, 11:24 am

I`m 41 year old female with normally no health issues at all. My problems started 18 months ago. After some weeks of head ache twitches started all over the body (more in legs than anywhere else, but still everywhere). That time I was in panic, I searched google and of course found ALS with twitching and weakness. My weakness was though subjective (felling tired muscles all the time in my arms and legs and some slight pains). I had EMG done soon after it started and also MRI of head, blood checks and so on. After about 6 months I was checked again (with EMG and some blood tests) in ALS institute in Germany (where I leave). The doctor was very nice and gave me a lot of courage reassuring that it is not ALS (my tests and EMG were clean). At that time I had muscle twitches all over, “jumping” (jerking ) of muscles (mainly when relaxing or at night), vibrations now and then in my legs and subjective weakness (until then I did not know the difference between subjective and clinical weakness so I was still worry about it). So, I was very happy after that visit and almost stopped worrying about my symptoms.

Month later (11 months ago) my left foot started vibrating (almost 24 hours a day, but mainly felt it when relaxing or nights) and that was constant until 6 weeks ago. 2 months after the vibration started I had one more EMG (not on my foot) but on my legs done by a very well known professor (who specializes in EMG). Clean again. Then I found your forum which was very helpful as it explained so many things and my anxiety went totally down (at least 95% down). My fasciculations diminished a lot since then (or maybe I just stopped paying attention to it completely). Definitely my subjective weakness was gone (although it took many months). What stayed was vibration in my left leg (foot) which I stopped worrying about too. I had last year MRI of my spinal cord which showed slight disc protrusion (which was very slight) and my neurologist and orthopedist said that it surely would not cause these problems (although the guy who did MRI said that it could, but maybe he was not that experienced).

What started really worrying me and made me very anxious again is that about 6 weeks ago my other foot started vibrating often and vibration in my left foot became stronger. Then I have had since then lots of little fasciculations (like bubbling) in my feet (but more in left one) and tingling (also in right foot). And then my left foot is sore (like the soft tissues of it, especially outer part of my sole) since 6 weeks. Specially when I wake up in the morning and walk without shoes I get kind of stiffness and pain which becomes less after little walking but is there continually. My general fasciculation also became continuous since then, and jerking muscles at night, feeling weak and so on. All these things I can associate with anxiety, because I really started worrying again. But I wasn’t even thinking about ALS since many many months and started worrying again after having these new problems in my feet. And Im really freaking out now! I imagine that after general fasciculation and now my foot vibrating for almost a year weakness is coming (although I can do all the clinical tests) but this slight soreness and continuous vibrating, tingling , twitching especially in my left foot (and now also some in my right) makes me crazy and anxious.
2 weeks ago I went back to my general neurologist, who did clinical tests again and I convinced him (after saying I would pay privately for it) to do EMG in my left foot (so he put the needle) in 3 places and said everything was ok and clean. But I still worry. It was very quick EMG and he is general neurologist and I don’t know in all little muscles in foot how reliable it is that you pick the right one for testing if there is no obvious clinical weakness?

I just can’t explain this soreness and tingling and twitching in my feet which came all together additionally to my vibration and Im really scared.
I read a lot in this forum about people having problems with their feet but most of them had it since beginning of their symptoms and mine came kind of progressively: general twitching, then long time vibrating of my foot (almost a year) then twitching in my feet, soreness (mainly while walking or pressing the soft tissues, tingling).
Does anybody have had something similar? And would EMG show something if I felt soreness due to weakness but couldn’t present clinical weakness yet (there are so different opinions about it?

Really need some reassurance...
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Postby leaflea on May 17th, 2015, 8:37 pm


No need to start worrying NOW! Several clean EMG, then reduction in symptoms.

BFS is famous for waxing and waning, coming and going. It will sometimes even move or change, but this is not the same as progression. We have been at this about the same amount of time - 18 months. I too have had the leg/foot vibrations, strong in the left, non-stop 24 hours a day for eight months - more noticeable at rest. I felt it faintly in the right at times. What I think stopped it finally was maximum dosage of TUMS. Sometimes I feel it come back and if I take the TUMS for a couple days it goes away again. You might try it. Bad diseases like the one you fear do not wax and wane, and others would be ruled out by MRI. After 18 months anything else would be causing more problems than you have. I am 48 now, female. Good Luck to you.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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