Recent content by ltr

  1. L

    New member diagnoses myopathy still wondering

    Oh my god....what's next! Anyway Lily...do you have an email address? I said in my post, which was about 3 paragraphs long and took a long time to type due to the atrophy in my hands, that I would private message you when you were able to accept them. I am not sure why that, along with...
  2. L

    New member diagnoses myopathy still wondering

    That's exactly what I have said to my neurologists. What are the chances that I was doing fine, then became ill with 4 different diseases.....No way! I keep thinking if they would get to the bottom of it, they could stop my progression. Thanks John.
  3. L

    New member diagnoses myopathy still wondering

    Yes, and I can't believe there is someone with the exact same diagnoses as me. I have only been on Prednisone for 5 months and as soon as I tapered down the symptoms did get worse. Yet, the side effects of the Prednisone are somewhat bad too. I am also taking aspirin everyday and the rheumo...
  4. L

    New member diagnoses myopathy still wondering

    I also have a high prothrombin time (antiphospholipid antibody syndrome), myopathy and have tested positive and negative for lupus anticoagulant (it changes it's mind constantly!). Is this the lupus you have? Because it goes along with the high PT (prothrombin time). You should be tested for...
  5. L

    For Undiagnosed...Look to the Past

    Sorry mama....I was hoping for a positive outcome. But, it can still help if you show these to your docs. At least they can see the change then too.
  6. L

    For Undiagnosed...Look to the Past

    For those of you who are suffering an illness, are undiagnosed and not sure if you have atrophy or any kind of changes....I looked through hundreds of pictures today, to make a collage for my daughter's 16th birthday, and what I found made me feel much better. I fell upon pictures of myself...
  7. L

    Face twitching?

    I think with ALS it is mostly large muscles, but maybe a PAL will answer that. I do know that with myopathy I get facial twitching. Sometimes it feels like a hook is pulling my lip up!
  8. L

    Few questions

    Oh, how I know your frustration! My opinion is that the docs don't know so they say it's normal twitching. I think normal twitching is the twitching my kids get after a game, or the typical eye twitch that everybody gets. You talk about little pits around your ankles and I was wondering if...
  9. L

    It Just Blows...

    Jenny - it's not for you to just join and tell who should be here or not. I think that would be up to the moderators? Apparently you know nothing about myopathy. The people on here followed my illness for a long time and I was asked to stay. I will repeat poly mimics als.....why can't you...
  10. L

    Your knowledge and wisdom is needed

    Rosales - Please don't jump to conclusions....I know it is hard seeing as you are watching someone you love suffer so, but high CPK's along with your other symptoms can be other problems as well. Remember, EMG's can be normal in the other illnesses too. Have you been to a rheumatologist or had...
  11. L

    It Just Blows...

    Pldo - I answered your questions under the other thread you posted on. I think this thread should be dead.....no offense Lou, nothing to do with you!
  12. L

    Sleep study, update

    Hi Pldo, polymyositis is one of the myopathies. Myopathy mimics als and causes severe illness and debilitation. The only time a person dies from it is from respiratory failure, but it is treatable to an extent. I am on Prednisone and go to Johns Hopkins in Jan. to have methotrexate or IVIg...
  13. L

    weak neck muscles and twitching

    My neck muscles became very weak before I started Prednisone. It was very disconcerting. I had to rest my head back when driving.
  14. L

    Sleep study, update

    Neuromuscular diseases CAN cause fast heart rate and shortness of breath. Billy may have anxiety, but with his other symptoms this should be taken seriously. Myopathy can certainly cause rapid heart rate and shortness of breath......I know.....I have it. And my cardiologist said that was the...
  15. L

    It Just Blows...

    I wouldn't let that go Lou. As you know myopathy mimics ALS and that could be the answer to your problems.
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