Your Replies

  • February 16, 2015 at 4:04 pm

    Hi Jim-LA, I am glad that the Rituxan has helped you with the anemia. I will starting it soon, if the insurance company agrees. It is cheaper than IVIG so maybe they will like that!!!

    February 16, 2015 at 3:38 pm

    Hi Jim-LA, Thanks for all of the valuable information…Interestingly, I also developed diabetes during the last 4 years. I have peripheral neuropathy with pain in my feet. Since my last post I met with my rheumatologist and since I am going off of IVIG he is putting me on Rituxan. I will be getting my first dose in about three weeks or as soon as my insurance company agrees to pay for it!!! When I was diagnosed with CIDP four years ago they ruled out CMT first and got the diagnosis of CIDP through Sural nerve biopsy. I bought some ALA but have not taken it yet. My neurologist said he did not have a problem with me taking it.

    February 11, 2015 at 2:15 pm

    Hi “ldwilliams”..Thanks for the reply…I was curious how many would answer this post. It seems logical that if your immune system has already gone “haywire” then you could develop other autoimmune problems as well. My father also had rheumatoid arthritis, so maybe I inherited some predisposition to develop autoimmune disorders. I wish there were more research done on this.

    February 11, 2015 at 2:06 pm

    Hi Connie, It was a difficult decision for me to quit my job because it was so rewarding. As the director of an international program it involved travel (sometimes overseas). The last time I went to China I had difficulty at the airports hauling luggage, etc. Even though I am highly functioning with CIDP, I cannot walk long distances without resting and I tend to stumble and lose my balance so I walk slowly. In addition, it is difficult for me to fly long distances. Airplanes are not handicap friendly!!! As others on this forum have stated: CIDP severity varies from person to person. So, being able to work would vary accordingly. I was diagnosed at 59 so I was close to retirement. Since I was employed for 30+ years at the same institution I was able to reduce to 3 days a week for a year, but found that I was still doing as much because I had the same job description. So I decided to go parttime and worked in a more advisor role while I trained my successor. I realized that I could no longer be as active as I once was and it took my a while to realize it… Lucky for me, I was 62 when I finally called it quits. Now I draw SS and get an annuity from my retirement investments. I try to stay as active as possible. I am finding that I can live with CIDP and still enjoy life.

    February 11, 2015 at 1:32 pm

    I have foot pain similar to diabetic neuropathy. It feels like fire ants biting my feet and ankles while other parts of my body itch intensely. I have tried various remedies but find that Neurotin is the only thing that works for me. It does not affect me in a negative way and it does not sedate me like pain medication. I take it twice a day with 300 mg at night and 100 mg in the morning. I know you do not want to rely on medication but I have found that this is the only thing that really helped me.

    February 11, 2015 at 12:47 pm

    I was recently hospitalized with extremely high blood pressure. It was caused by the IVIG I received which caused my liver function tests to increase which caused the high blood pressure. I also suffered a small stroke as a result. I am going off of IVIG earlier than was planned because of this incident.