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Lemtrada chaqnged my attitude

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  • Carolinemf
    replied
    Hi Jerry,
    Yes your absolutely right you shouldn't be blamed for seeking some solutions. And i don't. I applaud your enthusiasm if anything and maybe envy you for it..Because I've been struggling to maintain any kind of positive attitude for a while now, I'm kinda 'over it' and tired of fighting. So to ya.

    I'll probably improve, I've been down many times before, but i must admit that i don't feel like trying this time.

    If you've read the other posts in here you may remember that I also was debating whether to take Lemtrada or not. I've put things 'on hold' for a while but I'm still very interested following you and craige and others that have shared their Lemtrada experience over the last year or so.

    Craig hasn't posted for awhile - hopefully everythings ok- and there has been a decided slow down of activity on msw in general -as we've been discussing elsewhere. Aside from our ms issues - there are a lot of stressful things going on lately for people to deal with so maybe when the dust settles a bit we'll see more activity on here again.
    I hope so.So keep posting.

    Leave a comment:


  • JerryD
    replied
    Gee, Carolinemf, I was beginning to suspect that I was becoming less sarcastic and more subtle. Can't blame me for seeking some solutions . And with the obvious lack of progress in treatments for progressive MS, anything is better than nothing !

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  • Carolinemf
    replied
    Yep.Jerry.
    Your sense of urgency manages to come through on all your posts.
    I think we all just wish you well.

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  • JerryD
    replied
    Hey Seasha.. just playing with you ! dyin myeln, I was infused in my neurologist's office/ clinic in Collegeville . I am tired of waiting for the 'gurus', Dr. Leist, Dr. Markowitz etc. Those guys are great but I need some real relief 'right now' ! I can't wait for their kids to finish college ! I've got to get my kid into college! Those guys don't show any urgency for my health ! My neurologist, Dr. McCarren, recognizes my desperation, and convinced Genzyme to give me the drug 'off label' ! I accept the possible risks . Just to get the opportunity to feel better, and more alive, than I have felt in7 years, I am willing to endure some risk . Good luck

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  • REG53
    replied
    Good to hear Jerry.

    YOU GO GUY.

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  • dyin_myelin
    replied
    Jerry I am so happy for you and I imagine that I know just how you feel. I asked my neuro about it and he said, well five years of monitoring I was like are you kidding me vs. the life sentence of MS. Did you have it at Jeff? I know they weren't able to do it at Penn last I asked. I see that you are optimistic on other places on the board, well to cross reply there are dead axons but some nerves that are merely demyelinated can heal and your body can focus on rerouting around permanently damaged areas now that the fire has been put out. I would try to play the guitar again a little every day.

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  • Seasha
    replied
    Originally posted by JerryD View Post
    Hey thanks, Seasha ! 'Hope it continues'? Why? What did you hear? Did I miss something?
    Just saying I hope your sense of wellbeing continues for a long,long,long time! That's all I meant

    Leave a comment:


  • JerryD
    replied
    Hey thanks, Seasha ! 'Hope it continues'? Why? What did you hear? Did I miss something?
    'Continue'! Me, too ! Anything anyone could contribute to the discussion, you're invited! Even a blind squirrel finds a nut..sometimes!

    Leave a comment:


  • Carolinemf
    replied
    Hi Jerry,
    I'm glad you've done well with Lemtrada. And some of your frustration regarding 'doing nothing' has eased and you're more positive.

    i have been monitoring any posts re - Lemtrada because of my own candidacy. i am especially interested in the itp concerns regarding treatment. Would i be able to get you to say more about your blood count/ tests etc during and after treatment?

    Any and all posts greatly appreciated,
    All the best.

    Leave a comment:


  • JerryD
    replied
    My eyesight isn't real great but I can see clearly now, the pain is gone !

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  • Kimba22
    replied
    Great news, Jerry.

    Best of luck with positive results from your treatment!

    Leave a comment:


  • pb909
    replied
    Good to read your shared thoughts.

    Here's hoping we all have a successful re-build of the bad cells, and it'll take time.

    My #1 goal is for it is to stop or slow down my disability progression, any improvement will be a bonus.
    Between my insurance and the Genzyme copay it basically cost me nothing.
    Another note:
    I've had a really good experience with my assigned Lemtrada MS 1-to-1 nurse.
    I mention this since I've read others have not had a great experience.

    Leave a comment:


  • hunterd
    replied
    GREAT NEWS!

    I hope it continues I will continue to keep an eye on your progress

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  • DebbieB
    replied
    Fantastic news!

    Hi Jerry,

    This is fantastic news! I'm so happy for you. I've been very interested in Lemtrada myself, but unfortunately my Neurologist is not a fan.

    Enjoy the new you!

    DebbieB

    Leave a comment:


  • Seasha
    replied
    Terrific News Jerry Hope it continues!

    Leave a comment:

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