Recent content by LUTHER

  1. L

    Diagnosis was just as bad as ALS

    I’m actually getting no treatment because very few doctors know what to do! It doesn’t respond to Parkinsons drugs, and I can’t take anything for insomnia because it can kill me in my sleep. They gave me a CPAP when I need a BIPAP because I cannot exhale. i really have no support and I have lost...
  2. L

    Diagnosis was just as bad as ALS

    I came back to update after 19 months, where I wrote “ I feel so helpless”. Finally got diagnosed with Multiple System Atrophy. My current situation is complete autonomic system failure, which is closing my breathing and at any moment, by brain can stop sending signals to breathe. It’s a cross...
  3. L

    Update from I feel so helpless

    As for the other diagnosis of Dysautonomia, it was ruled out as was Eaton Lambert, M.S. M.G. Cancer, Lyme, Lupus, Autoimmune diesease, and toxic poisoning. As for ALS, I didn’t go searching for it, I just went to the doctor and my doctor wanted to find out why his patient lost 63lbs from 263 to...
  4. L

    Update from I feel so helpless

    I by all means don't want to prove the EMG wrong. Two Emgs no als in 7mos period of time should be great news combined with they have found nothing else wrong. On the other hand they haven't found what is causing the debilitating to my nervous system and muscle weakness and weight loss. It was...
  5. L

    Update from I feel so helpless

    Thank you. Only thing I know is this all has been confusing to me. Clean Emg, but clinical examination says Als but EMG says normal second time but symptoms are worse and so many different opinions about ALS and some saying they had two clean before they got a dirty emg. I don't know what to...
  6. L

    Update from I feel so helpless

    Previous thread here. Good evening. Just got my second Emg. This one was done at a ALS specialist hospital accredited by the ALS Association. The Dr was extremely thorough and explained everything he did. It took about 2hours and he checked every where except my eyes! Conclusion was Mildly...
  7. L

    Get a good neurologist !!

    I know my previous thread was closed. I only sent this to say I have to start all over because the neurologist I seen completely lied on my evaluation. So much that when my PCP seen me, He couldn't recognize that this neurologist didn't see all the atrophy, difficulties breathing and swallowing...
  8. L

    I feel helpless

    Did anyone that had their EMG’s done, have their legs,back, arms, and neck done? I ask because I only had my legs and arms done on both sides ,and needles inserted as well. I’m just wanting to be certain that I had a through EMG.
  9. L

    I feel helpless

    Thank you Nikki. Although I’m still confused. I don’t know how to upload the EMG report, and I still have some of the same symptoms I was suffering before, I guess I will get more answers soon. But I guess you don’t start to regain muscle and strength with ALS as the stickies say, so now I have...
  10. L

    I feel helpless

    Well the doctor sat me down and showed me the Emg results. Normal it read. Then he did a clinical pulling and having me walk and all the other test. Results were that I had actually progressed from where I was previously when testing was ordered. Doctors said You don't get better, you get...
  11. L

    I feel helpless

    I was in no means trying to be a problem or seeking random question. Had I not spoken to someone in this forum who had a clean EMG, but, still had clinical symptoms and after 60 test finally was diagnosed with ALS, I myself who continue to have clinical symptoms, even after a clean EMG, am only...
  12. L

    I feel helpless

    I know I should be happy but I still feel something is wrong and that EMG is missing something. I still have the symptoms and now my jaw and lip is numb and my ability to urinate is getting worse. I have read others getting a second EMG because symptoms persisted, I’m confused now more than before.
  13. L

    I feel helpless

    Test concluded. Dr said He can assure me two things. He doesn't know what is going on with me And second is I definitely don't have ALS. Have to see doctor Wednesday, will keep every one posted
  14. L

    I feel helpless

    Finally at the Dr. Testing to begin. Be nice if I could believe that it isn't ALS. But you are right on. Karen, I believe it is. EMG starts now, I get results back Wednesday.
  15. L

    I feel helpless

    Dildugan, You are correct. I guess it’s because I had to fight so hard to get the test done that I have had and I’m wearing down so rapidly, that I’m just getting more anxious for a diagnosis so that a lot of things can be answered. But everyone here has been of tremendous help. It could seem...
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