11yrs.dealing with CIDP

    • Anonymous
      August 3, 2007 at 7:02 pm

      I was diagnosed in 1996 with CIPD. I had to go to three neurologist before we figured it out. I was very weak and had numbness, tinglining and tremors in hands. My legs and feet were the worst. I was on prednisone for a year, did IVIG treatments and also finally did a plasma exchange and was put on Inderal. I read all the stories,which helps me deal with CIDP.Right now I am doing great. I have not had a flare-up in two years and do not take any medication. My hands are back to normal but I still have numbness on the bottom of my feet with some weakness in my legs but can live with that. When I tell people what I have gone thru they can’t believe it and when I was at my worst people didn’t believe me cause I didn’t look sick. Now I just keep smiling and live for the moment not the past or future:)

    • Anonymous
      August 3, 2007 at 7:52 pm

      Lynette

      That is great to hear…how lucky you are to be doing so well.

      Miami Girl

    • Anonymous
      August 3, 2007 at 9:38 pm

      Thank you I do feel very lucky..it is nice to hear from others.
      lynette

    • Anonymous
      August 3, 2007 at 10:21 pm

      lyn,

      I have a similar story to yours.I must go now
      but will communicate later.I have many question.

      Iam back for a few questions. Do you have any clue what provoked your cidp ?
      Have you had any serious illness?if so how did it affect your cidp??
      do you take any medications ??? Supplements? special diet?

    • Anonymous
      August 3, 2007 at 11:51 pm

      First off, I want to welcome you to our forum. It is nice to hear from someone who is dealing so well & doing so well with this illness. You are one of the lucky ones, many of us here are not quite as lucky. Or maybe you are more the norm, & many of us here are not?
      I can only wish that I had responded to treatments as you have, even though I had PP within a day of being dx, & 4 more the next week. Still I deteriorated to a quad state in four weeks time. Even IVIG biweekly did not bring me around, solumedrol infusions did no more than keep me out of the nursing home. It is good to hear from someone who responded so well to the standard treatments…

    • herself
      August 4, 2007 at 7:24 am

      and welcome to our forum. It’s good to hear from someone doing so well and with a great attitude. We all need to take everyday one at a time. I’m not doing as well as you but not as bad as others, it sure effects all of us so differently. Guess we all need to be thankful for what we can do and keep plugging away.

    • Anonymous
      August 4, 2007 at 9:07 am

      Welcome Lynette, I am glad you posted. Its nice to hear from someone who is doing well. It gives us all hope.

    • Anonymous
      August 4, 2007 at 10:03 pm

      Lynette,

      It’s so good to hear you are doing so well. I have a 3 year old with CIDP. He is also doing well but still walks with a walker. We will take that right now, it’s better than not getting around at all.

      I also have an 11 year old boy going into the 6th grade and a daugher that is 8, going into the 3rd grade.

      Keep up the good work.
      Lori

    • Anonymous
      August 4, 2007 at 10:03 pm

      Lynette,

      It’s so good to hear you are doing so well. I have a 3 year old with CIDP. He is also doing well but still walks with a walker. We will take that right now, it’s better than not getting around at all.

      I also have an 11 year old boy going into the 6th grade and a daugher that is 8, going into the 3rd grade.

      Keep up the good work.
      Lori

    • Anonymous
      October 14, 2007 at 5:45 am

      Hi everyone..just browsing thru the threads and notice joe asked me some questions. I do not know what provoked my CIDP neither does the neuro, I had no serious illnesses.Currently the only med I take is for acid reflux and that has been just recently diagnosed. Every year at my job I am asked if I want the Flu shot but I remember my neuro in Dallas telling me not to because of CIDP. I do know that if I do get sick with a cold, stomach bug etc. (minor illnesses) about a week before my numbness in my legs gets worse and extends up to just below my knees otherwise it is contained to the bottom of my feet. I take no supplements or special diets even though I still need to lose the PREDNIZONE weight. I hope I answered all your questions let me know. I did just recently take a trip to Seattle and if you know Seattle the streeets are not FLAT, lots of inclines some pretty steep.
      I did rest alot before and needless to say was able to keep up with my family with just a few stops but by the time I got back I was exhausted and still five days later am sleeping 10-12 hrs a night. I do know that is the biggest effect with me is fatigue and I need my sleep and after reading so many post
      it seems very common with CIDP.Well now I am rambling on.
      Lynette

    • Anonymous
      October 14, 2007 at 6:24 am

      Hi Lynnette,
      Welcome.
      I am very new to CIDP. Symptoms started in April. Doctors are stll not sure it is CIDP. I have had solumedrol treatments. I am currently on Cellcept and IVIG. I live north of Dallas and wanted to know who your Dallas doctor was?
      How long did you live in Dallas? We have been here 25 yrs.
      I am so happy you are doing so well. It gives me hope that I can get better.
      I am 43 yrs old and feel 70.
      My family is dealing with alot of illness.
      We have a 22yr old son who has an aggresive form of IGa nephropathy that has left him with 50% kidnet function.
      He is taking many meds including IV cytoxan. He was on prednisone and gained wt and all the other symptoms associated with steroids. We just found out he will need both hips replaced because of the steroid. Now my illness and we have no insurance (husband is self employed and bc of pre existing conditions could notget individual health ins) we are just tapped out, so reading your post this morning has made my day so much brighter.
      Sorry for the rambling. Again congrats on the progress. God Bless You on your health.
      Thanks,
      Valerie

    • Anonymous
      October 15, 2007 at 12:10 am

      hi, valarie. My n

    • Anonymous
      October 15, 2007 at 12:22 am

      Hi Valerie, Bulebonnet, great name I love those wild flowers….I lived in DFW for 11 years from 1986-97.. i was diagnosed with CIDP in 96 but was very lucky to meet a team of doctors at UT Southwerstern Medical Center. They were great. The Dr. that diagnosed me is no longer there, he moved on to Kansas City.. his name was Dr. Barhon and he is very invovled with this organization. I had the best treatment at UT Southwestern.

      lynette

    • Anonymous
      October 15, 2007 at 3:07 am

      Thanks Lynette,
      I love wildflowers and since bluebonnets are the state flower i thought that would be my sighn on name.
      I am finally after 6 months and 2 referals on the appoinment list. We told them any doctor asap. That then put me on their cancellation list. Hope to get there soon.
      My current dr is very young but did extensive tests and followed protocol IVIG, solumedrol, cellcept. He was of the opinion that so many immune neuropahties are treated the same so not to take chances lets start something.
      Nice to know that you were treated well and had a good experience.
      DId you have the PP done at UT?
      Thanks for the response,
      Valerie

    • Anonymous
      October 15, 2007 at 11:02 pm

      Valerie,
      Hi, i did not have my PP done at UT.. I was living in Colorado at that time in 2002. I am tring to think of the nuero who is still at UT and I want to think Dr. Richard Lewis. If you can get in to UT that would be great…I went for six months not knowing what was going on with me and then my brother told me to go a medical school and they had me diagnosed within 24 hrs.

      good Luck,
      If you would like e-mail me at [email]lkgisi@hotmail.com[/email]
      Lynette