Diagnosed at 12, Treated 20 years later, need help

    • March 4, 2014 at 6:54 pm

      hi everyone,
      I just wanted to get some advice regarding treatment options. I was diagnosed with CIDP at the age of 12 after having progressive weakness, numbness, and difficulty walking or using my fine motor skills and inability to lift my left arm. However, after a few months with no treatment things improved, with residual numbness and weakness, but not enough to effect my life. After being diagnosed, I was followed up with a child neurologist who indicated IVIG would be recommended if I had flare up that would last over two weeks. As time passed, ten years later I had trouble swallowing for about 2 weeks, but it cleared up on its own. Five years after, I had double vision and my eye went lazy, but it also cleared up in two weeks. I later relocated and was followed by a new neurologist who did not think any medication was necessary since I appeared to be doing fine. Now I recently relocated across states a year and a half ago. My new neurologist told me I needed to start IVIG right away, although I did not have any current symptoms that were affecting my quality of life and was able to do tasks. He also indicated he wanted to make sure there was no residual antibodies left when I was 12. However, I have been doing IVIG for the last 7 months, with no changes to my numbness or weakness, but the neurologist continues to want to recommend it and says after a few more sessions he wants to start me on some low grade chemotherapy drug. After the 6th IVIG infusion, I started to have blurred vision in my right eye and it started to clear up prior to my 7th IVIG infusion, but a few days after the 7th infusion my blurred vision appeared in my right eye again. Have any of you experienced blurred vision from IVIG and has your doctor prescribed IVIG when your symptoms were ok for the most part for any period of time, mine being 20 years? I am really confused on whether to continue the IVIG knowing it doesn’t do any difference, but feeling like it is causing more problems (i.e. blurry vision). As for my EMG scores, my nerves are functioning at 20-40% of a normal person, but oddly enough I am still able to do things, even snowboard. Can anyone help me with my situation. Do you think I should continue the IVIG infusions and do you think that it can be causing the blurry vision?

    • March 4, 2014 at 10:00 pm

      According to studies made during clinical trials, common IVIg side affects can include headache, fever, fatigue, shivering, nausea, chills, dizziness, vomiting, migraine headache, pain in extremity, hives, cough, itching, rash, and faster heart rate. Blurred vision is a more serious side affect and could be related to Hyperviscosity syndrome. In hyperviscosity syndrome, the blood becomes thick and does not flow through the body as quickly as usual. An overdose of IVIg may lead to fluid overload and hyperviscosity.

      IVIg will help stop your autoimmune system from producing more bad antibodies. To my knowledge it won’t get rid of residual antibodies already in your system … that is the job of Plasma Exchange (PE).

      If your neuro continues the IVIg, you should ask about lowering the dosage and/or the infusion rate. If he is correct about you having too many bad antibodies in your system, maybe PE would be a better choice for you than more IVIg treatments. I don’t understand the low dose chemo unless there is some other disease that has been diagnosed?

      Being 20 years post onset and having 20-40% EMG scores seems to indicate there is some permanent Myelin and Axon damage. I’m glad to hear it’s not enough to keep you off the slopes though 😉

      What city are you in? Maybe there is a more experienced CIDP specialist nearby.

    • GH
      March 5, 2014 at 2:42 am

      I can’t say what your treatment options are, but recommend you seek a second opinion from a neurologist experienced with acquired peripheral neuropathies generally. I doubt there are many CIDP “specialists” other than those doing research on the disorder. A neurologist must be familiar with them all in order to do the differential diagnosis.

    • March 6, 2014 at 3:48 pm

      Thanks Jim-LA for the input. I think you gave me more information than my neurologist has given me. He would say it’s due to the CIDP, which doesn’t make sense because shouldn’t the IVIG be helping with CIDP symptoms. Anyway, I reside near Denver, CO. If you can think of any providers in that area it would be greatly appreciated.

      Thanks GH for replying, I agree with you regarding the second opinion. I have been currently trying to seek a new neurologist but it is hard to find someone who has expertise is this area.

    • March 6, 2014 at 4:49 pm

      Have you considered other treatment options? IVIG does not work for everyone, myself being a case in point. After no positive results with the IVIG infusions, I tried Ratuxin with mixed results, prednisone, cellcept, several of the MS drugs and plasma exchange. Diagnosed with CIDP in ’96 (after having GBS in ’85), so have been fighting it for a long time. My current treatment consists of 2000 mg cellcept daily, plasma exchange every three weeks with a 1,000mg IV does of prednisone. This has kept me pretty stable for the past several years. As I am sure you have read on this site, everyone responds differently to the various treatments, and sometime the body builds an immunity to the various treatments reducing their effectiveness.

      Regarding a neuro, you may consider contacting the Craig Institute. They are a premier spinal injury facility, but would think they would know a go to doc in Denver. Good luck.

    • March 6, 2014 at 11:49 pm

      Your closest Center of Excellence is either in Phoenix or Kansas City. See the full list here: http://www.gbs-cidp.org/home/get-support/centers-of-excellence

      There are some GBS-CIDP Foundation contacts in Colorado. Perhaps they could recommend some neuros where you could get a second opinion:

      Kristin Bueb
      Westminster, CO 80021
      (303) 881-4622

      Arlene and Bob McGarvin
      Austin, CO 81410
      (970) 835-3237

    • jk
      March 7, 2014 at 6:14 pm

      I also encourage you to go to a Center of Excellence.

      Specifically, you need to find a neuromuscular specialist. A run-of-the-mill neurologist does not meet this criteria. How did GH put it? “…experienced with acquired peripheral neuropathies generally.”

      In some cases, the nerve and muscle testing will neither rule in nor rule out CIDP. However, when the IVIG is effective there will be noticeable physical improvements, usually within 1-3 weeks, which may not last. EMG and Nerve conduction (NCV) velocity values may not immediately improve.

      Consider this: “IVIg has been introduced as the main therapy for CIDP over the last two decades. Multiple well-controlled studies have demonstrated that approximately 50–70% of patients respond to IVIg.”

      So, the conclusion could be drawn that 30-50% of patients do not respond to IVIG. You can read lots more simply by searching “cidp does not respond to ivig”

      For example- http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3105635/

      You say you’ve had infusions for 7 months. How much IVIG and how often can make a difference in treatment outcomes.

      I’ve heard (or read) about people getting IVIG every week to maintain status quo and prevent progressive losses.

      I have not heard of vision problems with IVIG. If this only happens during or shortly after infusion be sure to check with your doctor and the Infusion center about the infusion rate prescribed for you. Huh? Some, less experienced, infusion centers will blast you as fast as possible to get you in out sooner.

      Good luck

    • March 18, 2014 at 6:09 pm

      Hi GAvol,
      Thanks for responding. I have never tried another treatment. I’m just unsure why I am doing any treatment at all if I was stable to begin with.

    • March 18, 2014 at 6:09 pm

      Jim-LA Thanks for the contact information

    • March 18, 2014 at 6:15 pm

      JK thanks for the info, I got a loading dose twice a month for the first 3 months and the rest of the months I got 72gms of Carimune once a month. I’m not sure if that is a lot or not. My MRI results showed abnormal enhancement of my optic nerve, which is probably optic neuritis. I will be seeing my dr this week. You would think the IVIG would have helped with the eye problem, but I see what you mean regarding people getting or not getting better with the ivig.