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Thread: My turn to rant...again.

  1. #11
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    Thanks! I will check this out as David usually takes a low dose aspirin every night and then every other night two full strength aspirin with his Beteseran shot. Always feels better the day after too but is is the aspirin or the shot???

  2. #12
    Senior Member willingtocope's Avatar
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    Been meaning to ask. How's the Ampyra working?

  3. #13
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    You have me so interested in this Hughes Syndrome. Its remarkable how all that makes sense and so it actually "fits" David better. He goes for an MRI Tuesday and then to the Dr. to have the MRI read Thursday, this will be brought to his attention.

    The Ampyra...it worked great from day 1, got movement in limbs that never moved but now after taking it for some time everything has just stalled again. I mean he hasn't lost anything that he got back but isn't gaining any more either. Now this has me wondering it we just hadn't tried hard enough before Ampyra or did the Ampyra actually improve things. Does that make sense? I think I just confused myself, sorry I am so tired.

  4. #14
    Senior Member willingtocope's Avatar
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    If you can get the doctor to at least entertain the thought of Hughes, let me know, I'll want to go see him. From what I've seen, Doctor's see the literature that starts "There is no cure for MS..." and assume that if you've been labeled with a DX of MS...there is no cure.

    For what its worth, my experience with Ampyra was about the same (and confirmed as "typical" by my MS specialist for what that's worth). Minor, minor improvement that kind of hit a plateau, and that was it. I decided at $1400 a month, I'd spend my money on a new wheelchair and a Braun Emtravan. (And make real good friends with the paramedics that come pick me up off the floor once or twice a month. DW even makes coffee after she calls them).

  5. #15
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    David got his Ampyra covered for free from Acorda Theraputics so he will continue to try it. His nuero is not a MS specialist but doubt he will even hear me out. We had the best MD she would do anything for us, but she just left last month and I have yet to find a replacement for her. My fingers are crossed, this really really sounds like something we should at least check out, I mean its just two simple blood tests. Our daughter is going to college as a labratory tech, if he doesn't hear me out, I am going to see if our daughter can take his blood to school and perform the tests for us at the college's lab. I was brought up...where there is a will...there is a way. I'll keep you informed.

  6. #16
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    I always have believed MS to be a pretty useless diagnosis, that it really names a collection of symptoms rather than a clear-cut disease, and that slowly they would come up with the different causes… like lyme disease, now maybe this. And doesn't it sound similar to that Italian guy’s theory, of things not draining properly from the brain.

    My MCV and MCH (which I think have something to do with blood thickness) have always been a little elevated in my CBC, and recently my platelet count has been a little high. Does anyone think that could mean anything?

  7. #17
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    I completely agree that MS is likely an "umbrella" diagnosis of many things that cause somewhat similar symptoms. Why else would meds work so well for one individual and not at all for another? Why would the rates of progression and symptoms vary so widely among patients? I had a pretty aggressive form of the disease and have been in a powerchair since 2007 (diagnosed in 2002). When I finally found a doc to prescribe novantrone, my progression slowed down for the first time ever. I was lucky that I found something to stabilize my disease, because it doesn't seem to work for everyone. Every time I go to an MS Talk and hear the local neuro talk about the various drugs available, it just irks me. They almost always mention novantrone as "a really aggressive treatment that nobody uses because it has such high risks." Of course, they also say that Ampyra isn't meant for people in wheelchairs! So I prove them wrong on both counts.

    I've done Ampyra since August. I had the initial AWESOME benefits, which tapered down to pretty much nothing. But the cognitive benefits have been wonderful! That's not one of their claims, but it has helped me immensely with my ability to focus and concentrate. I started working part-time late last year (teaching college bio). I went off Ampyra, thinking it wasn't doing much for me physically. I noticed an incredible difficulty in concentrating and trying to focus on lesson planning and such. The cog fog was huge! After about 2 weeks (I also noticed major numbness that returned to my feet, and a heaviness in my weaker leg), I decided to restart Ampyra. Holy cow - the cog fog really lifted a lot! It's still there, especially when I am tired - which is a lot of the time, haha! But the improvement was very noticeable. And the major numbness in my feet improved too. I don't feel "normal" there, but it comes & goes a little bit instead of being just constant and complete lack of feeling.

    Anyways, I had hoped that Dr. Young would have responded to an earlier question I had about the honeymoon effects of Ampyra, but perhaps he is unable to give any comments about it at this time. Still, I'd love to hear some validation about this from a doc at some point. My neuro (an MS specialist), doesn't seem to think that the effects can just taper off like I've described...

  8. #18
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    Retto76 - thanks for your input about Ampyra, I was considering taking David off of it too but was scared to. Now that you have tried, I will leave him on it. I would really like to know why the effects taper off but I guess time will tell, maybe more will speak up and we will get out answer.

    As for the Hughes syndrome, we went to see his Nuero Thursday, he too agreed MS is an umbrella diagnosis but wouldn't schedule the blood work, he did agree however to check out the disease that he had never even heard of and get back to us. Wonder how long that will take But we decided to go about it ourselfs and add more aspirin to his regimen and see what it does.

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