HSP and neuropathy

Posted - September 2013 in Your Say

Sandy writes: I have HSP and neuropathy and have not found anything for the pain.  I have tried everything for pain including a trial for a spinal cord stimulator.  If anyone has an answer for this I would like to hear from them.

Comments on this story

  1. Adam posted at 11:35 am on 21 October 2013Reply

    When neuropathy first presented for me I didn’t know exactly what it was, thought it was just another HSP symptom. However once it had been identified the neurogeneticist I’ve been seeing for a few years suggested I try Gabapentin. While not completely dealing with the issue, some days nothing will really help, it has lessened the adverse impact. I’ve been using it for a few years now along with Baclofen as an antispasmodic. We did try another drug earlier on but without much success. I can’t recall the name of that though sorry.

    Best wishes sorting this issue.

  2. Sandy posted at 1:48 am on 5 November 2013Reply

    I have had neuropathy for 17 years and have tried every thing that one Dr could think to try and so far nothing has helped. My onset of HSP was about 10 years ago. My son has had HSP for 35 years and has used a wheelchair for much of that time, now he has neuropathy and can’t take the side effects of any medication. I take 3600 mg of gabapentin, baclofen and Cymbalta and still have burning and pain. Wish someone would find the answer so our lives would be better.

  3. Di posted at 5:05 pm on 27 April 2014Reply

    I use Lyrica which works well, dose changes required occasionally.

  4. Heather posted at 7:55 pm on 9 August 2014Reply

    I used Baclofen for a while, did nothing for me. Specialist put me on Dantrium. That helped me so much with spasms and pain – just an idea.

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