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PMR and GCA and now a dr. is thinking possibly thinking could be Myasthenia Gravis/MS or Lupus

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pam21073
pam21073

I was told I have PMR/GCA two years ago and never was pain free but was able to come off of prednisone three months ago and had a relapse the end of Jan. and it has came back so much worse this time and had to start back on the 60mg of prednisone and am now down to 20mg which I think is too fast. I have had so much more going on with headaches,vision,stomach,back,legs and it just seams like every part of my body and feeling very depressed because the doctors just keep saying come back in three months and I am not sure I can wait that long. Recently I went for a free stroke screening at my local hospital and the doctor there suggested that I as my doctor to possibly check into me having Myasthenia Gravis which is in the same family as ms or possibly looking into Lupus. Has anyone else been told they had PMR and then found out it was something else??????  Feeling discourged

0 likes, 7 replies

7 Replies

  • grandmaDylan
    grandmaDylan pam21073

    Posted

    About 13 years ago when I started to feel totally fatigued, dizzy unable to walk in a straight line my doctor checked me for MS. Lupus, polymyalgia and myasthenia gravis. Everything came back negative but eventually I was diagnosed with ME and later fibromyalgia. I started to feel even more pain and did some research and came up with polymyalgia and asked my gp if he thought I may have it. Two different doctors said no, but when I asked a third doctor he agreed to try out the prednisolone test. I felt like a new woman and have been on pred for almost a year and so far have tapered to 6mg. I am in a lot of pain but I really want to get of the pred as it has caused huge problems with my diabetes. Last year was wonderful, I could walk up and down steps and walk quite long distances. Now I am walking with a stick, can't manage stairs and can only walk a short distance. This is due mainly to my osteoarthritis, if only there was a painkiller as effective as pred without the horrid side effects.
  • ptolemy
    ptolemy pam21073

    Posted

    As it is not really possible to diagnose PMR as such doctors assume it is PMR when they cannot find it to be anything else, so it is quite easy to misdiagnose. In general all the illnesses you mention are difficult to diagnose correctly, as seems to be true of a lot of auto immune diseases. A friend has myasthena gravis and his symptoms are very different to mine, I have PMR. He tends not to have the pain I have but extreme muscle weakness with his eyelids drooping even, he also had double vision. He now takes pred and is pretty good.
    • pam21073
      pam21073 ptolemy

      Posted

      Thank you! Right now it feels like the auto immune disease what ever it might be is taking over my whole body from the inside out and everyone says loose weight and you will feel better and I know I need to but my body right now doesn't want to do anything even when I want it to.
  • Anhaga
    Anhaga pam21073

    Posted

    It is no wonder you are depressed.  Pain and fatigue are hard to deal with, and perhaps those around you aren't really understanding what you are going through.  Did you have to go to 60 mg pred because of the GCA flaring up?  Yiour current reduction does seem rather fast, the 60 mg can't have had time to do its job.
    • pam21073
      pam21073 Anhaga

      Posted

      Yes the 60mg was for the GCA flair. I had one of the worst headaches I had ever had for three days and finally got in with my doctor on Jan. 28 the the Sed rate was 51 and the CRP was 35.9 and now I just feel like I am falling apart
    • Anhaga
      Anhaga pam21073

      Posted

      Oh, Pam, I am so sorry.  But you are not going to fall apart!  You will start to feel better soon, especially once the doctors get their act together and help you get to the right dose. 💖
  • LayneTX
    LayneTX pam21073

    Posted

    Pam, I have no advice, but wanted to send some compassion and love your way, cyber hug. I hope like heck something will make you feel better and healthier. 
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