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This patient support community is for discussions relating to Amyotrophic Lateral Sclerosis (ALS).

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ALS??

Hi, I am a 38yr old female with a list of past & present heath problems but my concern is ALS & do I have it?? I had a double discectomy & fusion @ the c5-6 level in 2005, since then the severe pain I had which was localized to my left shoulder blade & could only be described as what I would imagine getting shot with a hunting rifle through the shoulder would feel like went away with surgery but as tine has lapsed new symptoms have started & progressed steadily. First I woke up with a severe cramping & pain in the muscle surrounding my left shoulder blade area which subcided after a day or 2 but left behind total numbness in my left index finger which in 1 year time has spread to my thumb & middle finger & the inside of my ring finger, to the ball of my thumb up my forearm(top) & is now working its way up my bicep. I get severe muscle cramps & muscle locking(this happens if I reach behind my back to do up my bra or scratch ect...but if I pull my arm back towards the natural position it will release from this “locked“ state as I described. I can no longer do up my bra without looking at it nor can I button up my shirt or pants. Then one morning I woke up & could not put any weight on my left foot & fell over catching myself before I hit the floor wondering “what now!) So I went to the clinic as I do not have a family doc & the clinic doctor said I have dropped arch in my foot which is causing my instability, carpol tunnel causing the numbness in my hand & arm & I did get an MRI which said I have narrowing & mild deformity of the spinal cord @ the c7 level which according to the clinic doc is why I have the pain & the locking in the muscle around the shoulder blade, to me it feels like I have a perma-knot & when my husband rubs it for me he describes it as a hole?? I have had EMG‘s(2) done & both were abnormal & no follow ups wers ever done. I have seen a neurologist who said it maybe early onset CSM(cervical ?? myelopathy) which he seemed to shrug off & say theres nothing that he can do, basically I get to suffer in pain & discomfort with a clinic doc who prescribes me orphenadrine, cymbalta, naproxyn & 75mcg/h fentanyl every 72hrs which he plans on cutting me off of next month. I have approx 95% of the onset symptoms if ALS & severe pain & zero compassionate care. Oh & early last week I realized while trying to sign some documents I can no longer write!! I am very frusterated & am in tears alot. PLEASE HELP!!
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I also forgot to mention if I lay on my back @ night I cannot breath, this has been passed off as COPD as I do unfortuneatly smoke & I occasionally have difficulties swallowing & when I finally manage to it hurts very badly for around 30-45sec which feels like a severe chest pain??? I‘m so tired of these problems I have considered death over any further suffering, I have no one & cannot take anymore pain & discomfort!!!
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I am sorry, my husband just reminded me to add that all of my numbness and foot issues are on the left, also 1 week ago I had twitching in my left eye that lasted for 2 days & I do get muscle tremors in my left arm as well as twitching while at rest, or thats when I notice it the most. I really look forward to any and all feedback. please :‘(
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Hi Jodylynn, your symptoms are so vague but my brother suffered with ALS, this disease took over 3 months to diagnose. He first started with foot drop, (his foot drug on the floor) then fingers and arms became tired easily, hard to pick up a pen or telephone ultimately started on his left side then spread all over. He was very active his whole life played sports, worked full time job and recently became a dad then his life came crumbling down. Have they checked you for MS? I hope and pray your diagnosis is anything but ALS it's a terrible disease and by the way is very rare. No one in the family was ever diagnosed with this sadly my brother was the first. Please keep us posted! God Bless you.
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