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Type: Posts; User: Ian B

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  1. Replies
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    I'm one taking both. I was also taking up to...

    I'm one taking both.

    I was also taking up to 120mg of Baclofen daily but it was losing efficiacy and my neuro wasn't happy at increasing the dose, so asked me to try Zanaflex. I had to ramp down...
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    Hi, It'd be worthwhile you joining, or at...

    Hi,

    It'd be worthwhile you joining, or at least checking out, the Yahoo HSP Support Group, all the info you want can be found there http://health.groups.yahoo.com/group/HSP_friends/

    Ian
  3. Thread: zanaflex

    by Ian B
    Replies
    23
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    4,431

    I'm taking both Baclofen and Zanaflex. My...

    I'm taking both Baclofen and Zanaflex.

    My neuro wasn't happy at the prospect of increasing the Baclofen dose (up to 120mg daily) so he asked me to reduce that and give Zanaflex a try, I'm now on...
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    Poll: I'm non sci, my disorder is Hereditary Spastic...

    I'm non sci, my disorder is Hereditary Spastic Paraplegia.

    60mg a day, down from up to 120mg and tolerated well, but now I'm also taking 80mg of Zanaflex. My neuro wasn't happy with the...
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    Similar symptoms here, especially the clonus and...

    Similar symptoms here, especially the clonus and muscle spasms, which were initially put down to the onset of MS after proteins were found in a lumbar puncture, but was then ruled out after MRI scans...
  6. Thread: EMG test?

    by Ian B
    Replies
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    3,047

    As other have said, there's little to no...

    As other have said, there's little to no discomfort in having it done.

    I have a neuro disorder, Hereditary Spastic Paraplegia, and I've only had it done the once, that is to say should have, but...
  7. Hi Kati, My fingers aren't bad enough to...

    Hi Kati,

    My fingers aren't bad enough to really affect any day to day things, except my guitar playing, a lack of strength and co-ordination in them makes this hobby more difficult as I've got...
  8. Severe ankle clonus here due to my having...

    Severe ankle clonus here due to my having Hereditary Spastic Paraplegia, also involuntary finger flexing into a fist shape on both hands with the occasional spasm in both arms. HSP is a rare disorder...
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    Hi Neal, I was referred for a lumbar puncture...

    Hi Neal,

    I was referred for a lumbar puncture after another doc noticed something badly amiss with my legs, namely the muscle tone, they were nearly rigid even when fully relaxed.

    If I'd...
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    Hi Neal, Just out of interest, my lumbar...

    Hi Neal,

    Just out of interest, my lumbar puncture was done long before my being diagnosed HSP and the results baffled my neuro at the time because they showed the presence of protiens that in his...
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    Hi Neal, HSP since 95/96 here and I guess in...

    Hi Neal,

    HSP since 95/96 here and I guess in that time I must have had antibiotics for something or other, and if I had I didn't get any relief in HSP symptoms, tho' mine have never been as bad...
  12. Yes, I believe they are the in the same family of...

    Yes, I believe they are the in the same family of disorders and in a broad sense PLS would cover me as I have issues with my arms (spasms) and hands (fingers involuntary flexing into a fist shape) At...
  13. More so when said symptoms are usually associated...

    More so when said symptoms are usually associated with diabetes or MS, the former is easily checked for, but the latter............
  14. Hi Bonnette, Personally, I'm not convinced I...

    Hi Bonnette,

    Personally, I'm not convinced I have HSP as I have symptoms that simply don't fit. My current neuro is of the opinion I may have a secondary, albeit unknown atm, disorder. My...
  15. I'm not SCI and my neuro at the time told me my...

    I'm not SCI and my neuro at the time told me my lumbar puncture seemingly showed the presence of protiens that indicated cancer or MS, but both were instantly ruled out. He went on to say *something*...
  16. Thread: botox

    by Ian B
    Replies
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    4,427

    My neuro suggested trying it on my legs but the...

    My neuro suggested trying it on my legs but the idea was dropped as I'd have needed so many injections my legs would resemble a dart board, not counting the amount of hospital visits to have it...
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    I've recently been put on Zanaflex as my neuro...

    I've recently been put on Zanaflex as my neuro didn't want me to increase my Baclofen dose beyond 120mg a day. Initially the Zanaflex caused constipation, tho' not in the normal sense, in fact my...
  18. Thread: baclofen

    by Ian B
    Replies
    18
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    6,287

    I've been taking up to 120mg of Baclofen daily...

    I've been taking up to 120mg of Baclofen daily for a few years now, my usual dose is 50mg twice daily, but if I know I'm going to be unusually active I take the extra 20mg.

    The muscle tone in my...
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    Poll: Nothing to do with the survey, but it seems we're...

    Nothing to do with the survey, but it seems we're now up to 48 affected genes http://www.plosbiology.org/article/info%3Adoi%2F10.1371%2Fjournal.pbio.1000408

    Ian
  20. Replies
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    Poll: I'm 52, waist down and much like wheeliecoach,...

    I'm 52, waist down and much like wheeliecoach, affected elsewhere but not as much.
  21. Thread: Curing HSP?

    by Ian B
    Replies
    2
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    2,671

    Hi Searock, Nothing new recently that I'm...

    Hi Searock,

    Nothing new recently that I'm aware of. My understanding, albeit limited, is that HSP is still very much a mystery.

    If you're not a member/haven't checked these sites, they're...
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    I take 100mg of Baclofen daily and drink once,...

    I take 100mg of Baclofen daily and drink once, maybe twice a week and have yet to have any issues.............and I like a drink when I do.

    Ian
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    Yes, but only after it crashed............... ...

    Yes, but only after it crashed...............

    Ian
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    Thanks again Sue, there's lots of reading for me...

    Thanks again Sue, there's lots of reading for me there.

    Ian
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    Hi Sue, Thanks for the info. A quick google...

    Hi Sue,

    Thanks for the info. A quick google shows it may help certain MS sufferers as well, so at least my neuro *should* know about it. If it works in a similar way to 4AP, it could possibly help...
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