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ALS, MS or what???
I've had two MRIs and a lumbar puncture - the MRIs show lesions which the neurologists say are "insignficant" and the lumbar puncture was normal. The only thing doctors have found are epstein barr active, vitamin d levels low (10) and thyroid indicating underactive thyroid. My symptoms have been as follows:
1. Extreme fatigue and muscle weakness (started with upper arms) and then went to legs at the beginning of September. Comes and goes intermittently. Also had twitches. As from end October I noticed that the muscles are stiff. Have been taking Calciferol 50, 000 units weekly for two weeks now, Euthyrox 25mg.
2. Strange sensation in throat/neck area (a tingling sort of sensation but also feels as if there is some weakness there).
3. Needing to clear my throat more often.
I have been "suspected' of having MS before but 3 neuro's say it is not MS. I am very scared that it is ALS. Can someone please give me some guidance?
1. Extreme fatigue and muscle weakness (started with upper arms) and then went to legs at the beginning of September. Comes and goes intermittently. Also had twitches. As from end October I noticed that the muscles are stiff. Have been taking Calciferol 50, 000 units weekly for two weeks now, Euthyrox 25mg.
2. Strange sensation in throat/neck area (a tingling sort of sensation but also feels as if there is some weakness there).
3. Needing to clear my throat more often.
I have been "suspected' of having MS before but 3 neuro's say it is not MS. I am very scared that it is ALS. Can someone please give me some guidance?
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From what you've described above, nothing really sounds like ALS to me. I've been very scared of the disease for the past few months, and have done some pretty extensive research on it.
Here are the things that point away from it: the fact that you're experiencing symptoms in what sounds like all of your limbs, and also your throat. This is not generally how the disease comes on. It most often starts in one limb, then progress systematically to another over time. As well, ALS is never intermittent, so if your symtpoms come and go, it is highly unlikely that ALS is your issue. By its nature, the disease is progressive, so there is never any "getting better" or symptoms going away.
I will ask you this - when you state that you have "significant" weakness, what exactly do you mean? There is a big difference between perceived weakness and clinical weakness. This difference is imperative. Clinical weakness cannot be mistaken for anything else - this would mean you would be having trouble walking, using your keys, writing, etc. etc. If this is not what you're experiencing, it is highly unlikely that you have real clinical weakness.
In the past three months, I've experienced just about every symptom in the ALS handbook, and still do (ie. almost constant twitching, buzzing, current sore upper left arm). I have seen a neurologist and have had two rounds of EMG testing, and everything came out negative. Now, me believing that I am fine right now is another story, but we needn't get into that!
Hope I've helped a bit...