Diagnosed with CIDP in August

    • November 3, 2014 at 9:05 am

      Hi All! I’m 32 years old and I was recently diagnosed with CIDP in August. My symptoms started about a year ago and grew progressively worse over this last year. I initially was reporting my symptoms(numbness in the legs and fee) to my PCP and she ran every test she could think of and sent me to physical therapy. It seemed like the physical therapy helped but then my symptoms returned. Eventually my PCP said there was nothing else she could do and it was time to see a neurologist. After meeting with the neurologist for the first time, He completed a physical exam and said I had neuropathy but he wasn’t sure why since I wasn’t a diabetic. I went for nerve testing and they diagnosed me with CIDP. I started IVIG treatments in September(I go for five days straight for about 4 hours). I just completed my second round a few weeks ago. I feel like the treatments aren’t working and I’m getting discouraged. My neurologist keeps assuring me that it may take some time and not to get discouraged. There are days when I feel really bad and my feet are so numbed that it hurts to even walk. My legs are also so numbed that it feels like they’re not even there. Recently, the symptoms started spreading to my arms especially the right one. I think my biggest fear is that things won’t get better and this disease will debilitate me forever. Thanks for allowing me to share my story. Any advice, comments, or suggestions are welcome.

    • jk
      November 3, 2014 at 10:11 pm

      Hello and Welcome,

      The GBS_CIDP website has lots of good information within it’s different sections. Make sure to explore it all.

      Some patients will respond to IVIG when they have CIDP, some will not. A few doctors have said the positive response to IVIG is presumptive proof that the CIDP diagnosis is accurate. Clinical Trials (and practical experience) have demonstrated that different patients need different amounts of IVIG given at different intervals.

      In other words, every patient, and every condition, are different.

      I had a course of IVIG with demonstrated positive results that the doctors (neurologists) discounted as ‘arbitrary.’ They then discontinued the IVIG.

      Other patients on this website have reported benefiting from corticosteriods such as prednisone or a specialized treatment called Plasmapheresis (PE) sometimes in conjunction with an immunosuppressant such as Imuran- azathioprine.

      You would probably do yourself a favor to find a neuromuscular CIDP specialist. This website includes a list of “Centers of Excellence” should you live nearby one, go there.

      Be proactive, be happy. The downward spiral is hard to break. The Foundation offers contact people with peer support groups and functions you can attend.

    • GH
      November 8, 2014 at 12:25 pm

      A neurologist who thinks you need to have diabetes to have a neuropathy isn’t the one you want.

      IvIg is standard treatment, but isn’t the most effective for everybody who is diagnosed with CIDP. It didn’t do much for me, and when I crashed after two rounds of IvIg I was switched to plasma exchange. I don’t know what the outcome would have been otherwise, but in any case I have made nearly a full recovery.

      Physical therapy will do nothing to arrest the progress of CIDP. If the degeneration of nerves can be halted, then the nerves will have a chance to heal and PT will help restore muscle strength.

      It is much too soon to get discouraged. You need a neurologist who is experienced with acquired peripheral neuropathies and who will work to find the best treatment for you. You must be patient because there is no quick solution to this disorder.

    • November 10, 2014 at 11:14 am

      Thank you both for your advice. After reading your comments, I’m definitely trying to remain positive.