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Thread: Wise Young, HSP opinion please.

  1. #1

    Wise Young, HSP opinion please.

    Hello folks.

    First post here.

    I'm 44, have Hereditary Spastic Paraparesia. The main problems are spasticity (predominantly in my right leg) and fatigue.

    I live in Japan, have a neurologist at Tokyo University Hospital.

    You wouldn't believe there is any worldwide economic downturn judging by the sheer volume of (free) drugs prescribed over here.

    Here is my question, I currently take, for spasticity and fatigue :

    Baclofen 10mg, every 3 hours I am awake.

    Modafinil 50mg, 3 times a day.

    Piracetam 2g, twice a day.

    This works. I settled on this after a lot of trial and error.

    Foot drop essentially gone, spasticity very much under control. Fatigue 80-90% gone. No more heavy legs.

    Without any medication I walk like I am drunk, I fall over a lot. On the above regimen I can function, go to work, stand for long periods, even go out after work. I never fall over.

    My main problem is walking down stairs, but on the above meds with a hand rail I can do it very quickly.

    It does come with the overhead that it gets me incredibly stoned. All the drugs I find very pleasant to take, in combination it is like being blissfully calm, yet wide awake at the same time.

    I tried 4-ap last week, just 4-ap alone, nothing else. This was very good for my mobility as well, but I did feel a bit sick. i went back to my above combo. It works, and I actually enjoy it.

    Still haven't articulated my question, am I doing myself any long term neurological damage taking these drugs? Is it safe? I'll be doing this pretty much every day for life.

    These drugs produce no hangover, no tolerance, no cravings. I really can take or leave them. If I am sat down all day I just take Modafinil. If I have to move around a lot I take the Baclofen.

    It's been a year now of taking all this. It doesn't feel like it is causing any damage. But is there anything i should be worried about?

    Thanks a lot. If there is anybody here with HSP I'd be very interested in talking to you.

  2. #2

    This website has resources listed at the bottom of the page that you may find helpful


  3. #3
    I have HSP, as well as a L4/5 SCI (due to a complication from surgery in 2008), and I too find the spasticity the most irritating of everything. I did find that taking Baclofen and Zanaflex has helped reduce the spasms.

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