Best Care for CIDP and Pain Management in Oregon

    • Anonymous
      April 15, 2011 at 7:40 pm

      I have a family member who is suffering with a lot of pain due to CIDP and arthritis in the spine, hips, knees, and ankles. After one treatment of IVIG, strength has increased but the nerve pain has also escalated.

      Any suggestions or insights on pain management and good physicians in the Pacific NW would be appreciated.

    • Anonymous
      April 15, 2011 at 10:17 pm

      Have you tried to contact the foundation to see if they have a list of dr’s in the area? That would be a good place to start, I think.

      Kelly

    • Anonymous
      April 15, 2011 at 10:20 pm

      Thanks, I will do that.

      [QUOTE=Emily’s_mom]Have you tried to contact the foundation to see if they have a list of dr’s in the area? That would be a good place to start, I think.

      Kelly[/QUOTE]

    • Anonymous
      April 15, 2011 at 11:47 pm

      I take Gabapentin for the pain, without it I can’t function.

      Is your family member taking anything to help with nerve pain?

      I agree about contacting a doc that specializes in CIDP

      Good luck, and hang in there.

      Rhonda

    • Anonymous
      April 15, 2011 at 11:51 pm

      Yes, he is on gabapentin and it helps, but not enough. The situation is complicated by the pain from the degenerative arthritis. Overall, life is miserable right now. He actually felt better before the IVIG. The increase in strength has been profound, but when the pain peaks, it is awful.

      [QUOTE=Rhonda]I take Gabapentin for the pain, without it I can’t function.

      Is your family member taking anything to help with nerve pain?

      I agree about contacting a doc that specializes in CIDP

      Good luck, and hang in there.

      Rhonda[/QUOTE]

    • Anonymous
      April 16, 2011 at 9:26 am

      I swear by Lyrica. It helped tremendously from the very beginning. It, along with IVIg, saved my life.

    • Anonymous
      April 18, 2011 at 10:04 pm

      I haved to take Alpha Lipoic Acid along with Neurontin in order to handle the nerve pain. I also take Cellcept, and Cymbalta. I was still in pain until I started the ALA. It is the only thing that seems to work for me.

    • Anonymous
      April 18, 2011 at 11:57 pm

      The subject of ALA finally reminds me that there was a Clinical Trial in Oregon to study alpha lipoic acid.

      Perhaps if you call them you can ask for help in finding an expert.

      Oregon Health and Science University

      Overall Contact: Diana Dimitrova, PhD 503-494-7269 [email]dimitrov@ohsu.edu[/email]

      The Trial may or may not be finished. You just need the contact info.

      [url]http://clinicaltrialsfeeds.org/clinical-trials/show/NCT00962429[/url]

    • Anonymous
      April 22, 2011 at 3:23 pm

      Thanks so much. We had been told about ALA but then had a bad, bad reaction to mix of medications so backed off on all additions to meds or supplements. We are going to retry ALA over the coming month. I really hope for positive results.

      [QUOTE=yuehan]The subject of ALA finally reminds me that there was a Clinical Trial in Oregon to study alpha lipoic acid.

      Perhaps if you call them you can ask for help in finding an expert.

      Oregon Health and Science University

      Overall Contact: Diana Dimitrova, PhD 503-494-7269 [email]dimitrov@ohsu.edu[/email]

      The Trial may or may not be finished. You just need the contact info.

      [url]http://clinicaltrialsfeeds.org/clinical-trials/show/NCT00962429[/url][/QUOTE]