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Strange course of symptoms

I am a 46 YO male and my symptoms: I had an onset of Fasciculations Cramping & Tightness, some discomfort (mild pain), no weakness and no sensation changes. This was in 2004. I was symptomatic for 6 months, absent for periods, returning for shorter periods. So on and off for approx 3 years. Then asymptomatic for approx 3 years and now returning. Again with complaints of same symptoms as above. I was never diagnosed with a neuromuscular disease. Saw several Neurologist and Rheumatologist. Had NCVs all normal. Several EMGs with a few abnormal which included increased insertional activities, positive sharp waves and fibrillations but no fasiculations or large motor unit findings. I had Head MRIs but nothing of the neck. My symptoms are largely in the arms L>R but in the same distribution of nerve and muscle. My leg symptoms are Fasciculations, cramping and pain. This time it started about 3 weeks ago. Almost like a carpal tunnel pain in L arm, however it has progressed rapidly and I am having symptoms in all 4 limbs as well as pain in the left scapula thoracic are with movement. I have never had weakness some perceived weakness and slight fatigue or discomfort with sustained static activity, mostly in the left arm. I have heard that in rare cases ALS like symptoms can come and go and there have been people that have had remissions and/or complete absence of symptoms only to return and is finally ALS. So obviously my questions are: Is this true that in rare cases ALS symptoms have come and gone but eventually return for good? Given all the info above what are the chances this is ALS? What else could it possibly be?
Also I hear a lot about no pain with ALS yet muscle cramps. I have what I consider anywhere from discomfort to a 3 or out of 10 pain



This discussion is related to Re: A Few More Questions Answered, Please.
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Avatar universal
I looked back on my EMGs: four of them, the first two late 03 and early 04 only showed  1 increased insertional activity. However the last two 12/04 had myokymia, positive wave, increased imsertional activity, fibs in 3 limbs and polyphasics in two. Then my last one 3/05 had increased insertional activity, fibs and fasics, no polys or positive waves.
unfortunately it is only the left leg and arm. I wish I would have had him do more. I know these are very significant findings. My negatives are certainly the EMGs, the fasciculations and cramping. With those I don't know what else it could be, so that is one answer I am searching for. The fact that there supposedly has been cases where symptoms have come and gone only to return and then eventually diagnosed ALS is scary. My only pluses is that it wasn't just a one time occurrence. As best that I can recall I had at least 3 separate period of time (now this time the 4th) with symptoms separated by periods of total absence of symptoms including one that was from either 2006 or 2007 to this last episode starting in mid Jan/10. Also no weakness. Also no Upper motor neuron symptoms/signs. Although Tightness/stiffness and cramps are hard to really define or differentiate. I tried to get ALSA to help me with the up and down symptom history and how it relates to what they have seen and heard over the years to see if this has happened before. Unfortunately they do not want to "diagnose" or be committal - instead suggested I seek the information at one of their clinics. I had been to two in the past and there was no answer then. I tried to explain that I am not looking for a diagnosis, really just an Idea if given my long up and down history - has this pattern been seen before and if so how common is it?
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