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Thread: It's been a while

  1. #1
    Join Date
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    Cool It's been a while

    Hello everyone, I know I have not been on line for a while. Life has had many twists and turns for me. I am sure for most of you as well. I'm a year into my connective tissue disease and for the most part I was battling this disease with a very positive attitude. Last summer I was ok, even this fall and part of the early winter I was ok and than BAM!!!! I fell apart. I started to feel sick again. Tired, nausea bad headache, hard to swallow, losing weight, numbness tingling and my favorite fatigue. I went to the dr and he ran some neurological tests I tested for lupus migrans which came back positive, but everything else came back negative..(nerve test). Than I went to my rheumatologist and he tested me for a disease called Myasthenia Gravis disease which came back negative. However my ANA came back at 1:320 which I know is high. My dr started to ramble off that my connective tissue is more on the lupus side and that my aches are due to fibromyalgia He also mentioned that the plaquenil is not working anymore. He now switched my meds o chloroquine. My question is.
    Can one have Myasthenia gravis even though your ana and nerve test comes back negative?
    Is anyone on Chloroquine? If so can you please tell me the side affects that you are experiencing? I'm nervous to switch as my dr has said this is a more powerful drug with more side affects.
    On a different note I did do the Lupus walk in NYC! i'm hoping to find a cure just like everyone else.
    To everyone who is suffering, I hope you find sunshine at the end of the cloud. It's nice to be home.
    Thanks
    LynDay

  2. #2
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    Hi Lynday,

    It is good to see you again.
    I am sorry, that you are having problems again. I really can't answer your question, but I want to share something else with you.
    When I was diagnosed with Lupus in 2006, the rheumy said, because of all the muscle pain I had, that he thinks that fibro is also involved. But now, years later, we know, that all my muscle pain comes from the Lupus. We found out, when he put me on Prednisone for the first time and ALL my pain was GONE. He said if it was Fibro, Prednisone would have not helped with the muscle pain.
    This means muscle pain is not always Fibro.
    You know, Chloroquine sounds very familiar to me, I think I have taken it before, but I can't remember. I was put on a lot of different meds, because Plaquenil didn't work for me.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

  3. #3
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    Ty Debbie! Good to see you as well!!! Thanx for your help��

  4. #4
    Join Date
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    Hi. I'm new here. I also have UCTD and I'm also on chloroquine as hydroxychloroquine did not work for me either. The only side effect I seem to have is dizziness. Not sure if its from the drug or just another symptom of this ever evolving disease process. So happy to hear you did the lupus walk. I signed up but was unable to go and sad about that. I'm on prednisone also which helps a lot. It's a doubl edged sword because it makes you feel better physically but you gain weight so you feel crappy emotionally. It is what is I guess

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