Links to Major Medical / Research Sites

    • Anonymous
      May 24, 2010 at 6:30 pm

      In another thread I asked if there was a resource on this site for trials.

      I found a resource on the MDA web site. Here it is:

      Please don’t let the als prefix mislead you.

    • Anonymous
      May 29, 2010 at 8:46 pm

      Have you checked into any of those sites?

      When I have time, not in the next few weeks but real time, I am going to check them out. The only one I found was at Oregon Health it would have been nearly impossible to get there, but when I found out it was alpha lipoic acid I decided against trying to get there. There was a movie, Lorenzo’s Oil, based on a true story. While the disease the little boy in the movie had was much different than CIDP, the boy’s father researched the alpha lipoic connection and was convinced it would work. It did not. I equate the alpha lipoic acid with snake oil. So, that’s my experience so far with clinical research. I just would wish for a place that would study the symptoms, Oregon Health was not at all interested in symptoms, they just wanted to know about the CIDP diagnosis. As we all know, the symptoms can be varied, with some so bad lives are negatively impacted to the point of hardly being alive, to mild symptoms that are just slightly more than inconvenient to live with.

      Would be interested in knowing if anyone has found a clinical trial that produced any positive results.

    • Anonymous
      May 31, 2010 at 6:12 pm

      [QUOTE=nicsmom]Have you checked into any of those sites?….[/QUOTE] In a word. Yes. At least, the sites that interested me.

    • Anonymous
      May 31, 2010 at 6:17 pm

      [QUOTE=nicsmom] I equate the alpha lipoic acid with snake oil. [/QUOTE]

      An interesting equation, particularly based on the research you quote. Good luck with your search in finding the absolutely proven, non-snake oil cure.

    • Anonymous
      June 1, 2010 at 7:43 pm

      And many deal with neuropathy pains. Some are still recruiting-guess it depends on where you live? Look at the trial’s eleigibility criteria and see if you qualify? Then go from there. Sometimes other docs in other areas will participate for one of their patients [or more] but the discouraging part is they’ve got to do a heap of paperwork….as if there isn’t enuf now?
      Things to think on tho, when applying, good luck!

    • Anonymous
      June 3, 2010 at 9:05 pm

      [QUOTE=nicsmom]…Would be interested in knowing if anyone has found a clinical trial that produced any positive results.[/QUOTE]

      Homeagain, At least I can agree with this question. The part about Any clinical Trial, of anything. Let’s call it the $20 question for now. It’s not up to the task of being the $64,000 question yet.

      Thanks for taking the time to research the available clinical trials. I love the sound of the one with fish oil + Alpha Lipoic Acid (ALA). At least it’s not snake oil……….hahahahhaa.

      In fact, I have used fish oil for years for my condition(s) and, truly, I took ALA for several months in the past.

      Result- I couldn’t prove which thing helped my nerve pain. But, my nerve pain is far below what it used to be.