No treatment but getting better???

    • Anonymous
      November 5, 2007 at 8:32 pm

      I have been home 9 month with GBS (initial) and then CIDP (probable) and I have gone from bedridden to walking with a cane with no treatment (only prayer). My NCV tests showed on Aug 29th that I was the worst since onset in February but on Aug 30th I took 2 steps on my own. Today I am walking most of the time without assistance (very slowly). My knee reflexes have returned; however my ankles are still awkward. Finger tips still a little numb.

      Has anyone gotten better with no treatment? I do not respond well to steriods and Dr is pressing me to make a decision. Since Dr could not decide if this was GBS or CIDP I am hesitant to treat at this point since I am getting better. I have another NCV test 12/6 so I am planning on waiting until then.

      Any thoughts or advice?

      Brenda G

    • Anonymous
      November 5, 2007 at 10:47 pm

      Hi Brenda, I have had a 2 day treatment of IVIG during my 2nd relapse and that is all the treatment I have had for the past 2 plus years. I had my 10th ncv/emg done last month which showed alittle improvement in the f waves but decreased in sensory. I am not being treated because of my allergic reactions to almost everything that is available, and drs who are too afraid to try it because of the possible reaction. I don’t have reflexes and have alot of the usual residuals. I have relapses but haven’t had one since the spring-fingers are still crossed;) . If you aren’t having too much in the way of problems then I would not do anything to rock the boat. If you have a relapse or an increase in resids than that would be the time to look into treatments. Its your body and you know what you are feeling, how you react to meds and you have a say regarding treatment. Take Care.

    • Anonymous
      November 6, 2007 at 12:13 am


      It’s really good to hear you’re doing better, but if you decide to go without treatment make sure you continue to stay under doctor’s care. I was misdiagnosed (and thus, not treated) for 6 years. Now, in that time, I finished high school and got myself into an impressive university and completed my first two years therel. Those first two years of college I decided I was “better enough” (re: sick of doctors) to continue trying to find my diagnosis – and while I managed to do all that I did, I can’t get back the years I lost to not treating my cidp, the years that could’ve been better.

      And, when I finally got dxed, I was kind of a mess, a doctorless mess. So like I said, the treatment choice is yours, but make sure you have someone watching your case!

    • Anonymous
      November 6, 2007 at 9:37 am

      Thanks for your response. I think I will wait and see how it goes at my Dec NCV appt and make a decision then. I know what my heart is telling me but my head and heart are not in agreement sometimes. Please pray for me if you have the time.

      Blessings your way,

    • Anonymous
      November 7, 2007 at 12:01 am

      I waited 5 years before treating my CIDP. I saw my neuro every 3 months to reevaluate and when the time came it was because I was starting to fall more and unable to do my job. I don’t regret waiting and I did not sustain damage as a result because I stayed in touch with my doc. Do what you feel is best. Good luck.

    • Anonymous
      November 7, 2007 at 11:58 am


    • Anonymous
      November 8, 2007 at 7:46 am

      If it were me I would wait, leave well enough alone. If things are going good. Steroids can cause all sorts of side effects that are not pleasant so if you can avoid them I would. December is not that far away any more! 😮

      Take Care,

    • Anonymous
      November 8, 2007 at 1:22 pm

      I have never taken the steroids. Told my doctor would prefere not to. I was only taking IVIG when I really needed to. I am not in what we call a remission. I still have side effects and am better than I was. Doctor and I email back and fourth and before and treatment options are chosen we get together to discuss options. so pretty much it is in my hands. we are hit and miss sometimes but yet we are getting some progress.

      I had a good emg test but I was also told that I am not to believe that is any indicator of recovery but yet a indicator of getting better. And was also told that I should not get my hopes up of a total recovery that this would be around forever. we are also going to the endocrinologist and all the autoimmune specialists that way we can keep on top of all of this.. good luck keep on top of your symptoms and you will get the results that you can handle. remember we are not given more than we can handle..