Possible MS, ALS Or Advancing Supranuclear Palsy

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To preface my concerns, consider the following: My Dad died of complications of Advancing Supranuclear Palsy. My Mom has MS and peripheral neuropathy. I am now 54 years old and male who is suffering neurological symptoms of assorted symptoms. About sixteen months ago I started to get extreme pain and muscle spasms primarily on the right side of my body. It starts seemingly in my neck and radiates into my right shoulder and arm. I paid for an MRI which showed lumbar and cervical spinal stenosis, bone spurring and bulging discs. Still need a Neurologist to read the report, four months in. An Internal Medicine specialist said "fibromyalgia, no other investigation needed." He put me on the following medications" Mirtazapine - 60 mg's at bedtime - Gabapentin - 900 mg's per day - Baclofen - 40 mg's per day. I have tapered these medications down over the last few months by 2/3'rds because they never helped me at all. Having trouble walking due to the spasms and rigidity. I'm afraid that I have ALS or Advancing Supranuclear Palsy (similar to ALS) because the symptoms keep getting worse. I'm on a waiting list to see a Neurologist but that could take ten months in our sham socialized medical system. Any thoughts as I'm suffering and scared as hell. 

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  • Posted

    I feel your pain. It took me 2 months to see a local neurologist in 2006   and 3 months to see another. Took 7 months to get to Mayo clinic. Which is considered a superb diagnostic clinic. In all, 9 neurologists in 4 states.    Ha.d to stop referring soccer(football) in 2011 and backpacking mountains in 2012. 

    I have no pain, just slow progression of muscle loss.     NO Other symptoms of any kind, I have hardly ever been sick and no tests that a doctor would say what have. Still a mystery. 

    I used   for a year looking for answers but no real help. Everything suggested already tested negative.  You have to get  very specific and detailed to get help. I would like to know results f you try it and get a result.  Good Luck and God Bless

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    • Posted

      allan16910 - Sounds similar but not completely. Hope you get some answers soon.

      To add some more information pertinent to my concerns, the following is occurring daily:

      1. Wake up and immediately notice that my muscles are in constant spasm. Struggle through a shower where it's very difficult to get ready. My upper body feels very rigid in general. Especially my right shoulder, arm and chest hurt badly with the muscle spasms causing my hand to not cooperate with shaving, brushing my teeth and so forth. Now spreading rapidly to the left side of my body as well.

      2. Strange sharp pains through my foot, leg and head, sporadic and unpredictable.

      3. Neck and back pain that radiates through my chest and sternum. Also, sporadic and unpredictable.

      4. As the day advances, I find that my entire upper body becomes much more rigid. Not easy to walk with the rigidity. The pain is also much worse later in the day.

      5. Weird burning pain in my face and forehead. Also much worse later in the day

      6. Take my Mirtazapine around seven to eight in the evening and usually asleep by ten.

      Note: After my Mirtazapine dose, my pain calms down enough to fall asleep on my back. Wake up, different day, same thing..., seemingly getting worse over the months. Really scary at times.

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    • Posted

      I forgot to mention one thing. It hurts in my lower throat and sternum when I speak. A very hoarse voice most of the time. I had an ENT specialist look at my throat, vocal cords, etc, and he said it all looked normal. He said my problems with my voice seem to be muscular and to see a Neurologist. That's exactly my take on it as my muscles in my chest and neck area seem to be interfering with my ability to speak.

      Also had an endoscopy about a year ago. Some old erosion where my esophagus meets my stomach. Barrett's esophagus was the diagnosis but all biopsies came back as normal. 

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  • Posted

    I'm so sorry to hear that you are leaving so awful. I want to share a little bit of my experience with ALS. My father and my uncle Both died from it.  My father was not in pain however he did have some spasms in his sides by his waste.   His legs and arms when he would open still jump a little. He lived  15 months and could walk and talk the night that he died.   If you get him the hardest in his diaphragm, so when it got really bad it didn't allow his lungs to move up and down like they needed to. If you ever have   A cough for two weeks. The Dr. said he would suffocate, but he did not. He died peacefully as he put his head on my mothers shoulder.   ALS affects people differently. With my uncle it was his legs first and he was in a wheelchair within six months. He was not in pain, but the saddest part  Is he lived six years.   You might want  to look at MS or MD.   I hope this has helped you Some.   Best of luck in all you do, and I hope you can see A neurologist soon.

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  • Posted

    Seek out another opinion from an entirely different Neurologist. 

    I am waiting myself as I was scared of ALS but the Neurologist said she didn't think so but tha I had enough symptoms to do the testing. 

    I do an MRI and the other nerve tests this week.

    Good luck and God speed! 😇

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