• Anonymous
      February 22, 2010 at 2:24 pm

      How do we know the difference ?

      My oldest sister, whom I havent speaken to for a long time, is undergoing tests and being tested for CMT and CIDP. From what I’ve been told, they are trying to figure out which of these two it would be.

      The Dr told her it would be very unlikely for us to both have CIDP so they are leaning toward the CMT. I dont really know her symptoms, only what her daughter tells me and details are sketchy. The Dr told her she may have to wear leg braces someday…I would then assume she’s having some foot drop or they are expecting it.

      I dont know alot about CMT…if anyone does, please share your info.

      I’m wondering if I could be misdiagnosed and that is why IVIG doesnt work for me. I wouldnt wish either diagnosis on her…so I’m hoping the Doc’s are wrong.

      thanks guys,

    • February 22, 2010 at 2:57 pm

      Early on when ivig was not working we talked about cmt. I thought I remember you getting the genetic test for it. CMT shows up similar to cidp on a ncv/emg, after the psych dx, our second dx was cmt. The lp was what ruled it out as well as our response to ivig. Anyway, it is a form of muscular dystrophy that happens slowly over years. It can have a hereditary component AS WELL AS A SPONTAEOUS MUTATION, so just because one family member has it does not mean another will. Athena labs, I believe, is the only lab that does it. When we were dx w/ it in error, I had researched it and yes, there was foot drop as well as other fine motor issues. For instance difficulty holding a cup, zipping zippers, typing surely would be an issue. With CIDP there are times you feel better and then worse, with cmt, there is no improvement in function. Since ivig is not working and now there is another familial issue, maybe if you did not get the test you could do so now. If it is not cmt, and the ivig is not working and you did not do well with the steroids, you could try the cytoxan as Ryan is doing as I mentioned a while ago,or maybe other imunosuppressants in conjunction with ivig. Good luck Stacey, I hope your husband is doing better. How is Connor? How are you?

    • Anonymous
      February 22, 2010 at 3:50 pm

      My husband is ok. Very slow to mend, still has bouts of serious nausea and weakness. It’s killing me to watch him deteriorate sometimes . I try to remain positive and in front of him, I am always. He’s going to be ok…but, he’s been thru five surgeries ,had a nasty infection and it’s going to take time. Time that I can hardly stand to wait for !
      I’ll wait till I can post good news.
      Thank you for asking, Dawn…and I am ok..emotionally spent and physically…well, I get energy somehow. By the grace of God, I do believe.

      take care.

    • Anonymous
      February 22, 2010 at 3:53 pm

      oh, and…the l/p ruled it out how ? That the protein wasnt high ? Mine was high and that with all the blood work to rule out everything else and the results of the EMG were how I was diagnosed.

      I asked my niece to find out if her protien was elevated. Sounds like they did an EMG and a slew of bloodwork. Would seem they are doing the right thing so far.

      I am just one that ivig doesnt work for…my progression is very very slow and right now I am on nothing. Just a wait and see. For what I have been thru emotionally and physically with my husband, I am doing GREAT. Not better, not alot worse. Just tired.

    • Anonymous
      February 22, 2010 at 4:00 pm

      Hi Stacey,
      About four years ago a new neurologist I started to see took one look at my feet and told me I have CMT as well as CIDP. I had the special bloodwork done to try to diagnose CMT, but that did not give a positive diagnosis. The doctor said some forms will not show positive in bloodwork so I could have CMT. Usually CMT is hereditary, but no-one that I can remember in my family ever had CMT. Again, the new neurologist said you can get it when it does not run in the family. When I was told I had a second chronic syndrome, my world spun out of control. The words “you have CMT” screamed in my head for three months. I researched all I could when I was able to read about CMT. I questioned why about 8 other previous neurologists didn’t diagnose CMT, was the new doctor wrong. I reached a very calm point where I chose not to allow myself to think about whether I have CMT. If I do have it, what is in my favor is that CMT moves slowly and I am pushing close to 70 years old.

    • Anonymous
      February 22, 2010 at 4:09 pm

      Hi, Stacey.

      When I was being tested for CIDP, I had a full genetics workup to rule out CMT, which is a hereditary disorder. The problem is that the symptoms of CIDP and CMT are essentially the same. One thing that indicates CMT is high arches, which I have as did my father.

      AAR, the genetics testing indicated that I have a 30% possibility of CMT, but since IVIg worked I was diagnosed with CIDP. However, my neuro has always had in the back of her mind that I might also have CMT.

      Keep fighting,


    • February 22, 2010 at 4:41 pm

      cmt does not have elevated protein, cidp DOES. As I mentioned, there could be a spontaneous mutation in someone, meaning it is not hereditary and that is why you cannot find it in the geneology. Maybe when things settle down for you with everything else around you, you can explore other options such as imunosuppressants.

    • Anonymous
      February 22, 2010 at 5:44 pm

      I thought she had high arches…she’s always had a baby toe that curls over the other. Her daughter told me she’s flat footed tho. Almost our whole family is flat footed.
      I’ve put a call into my Dr out of curiousity. The things I’ve read on CMT dont really sound like me. My feet are now “deformed” in that my toes are stuck together and always purplish. I have a hammer toe b/c of the paralysis.

      I guess the Dr was going to diagnose CIDP but b/c I have it, is ruling out CMT. She has to wait three weeks for a blood test to come back..sent it possibly Athena labs ? Her daughter thought it started with an A. Would be easier to talk to my sister but, ..well, that’s a long story.

      If there is a blood test specific…then, that’s what they are doing but also I was told, her spinal fluid result was high.

      I’m speechless and very curious .

    • Anonymous
      February 22, 2010 at 11:17 pm

      Don’t panic until the tests are done and the ‘jury’ is in? Please?
      I speak from experiences with siblings and Cancer…besides, you really can’t DO anything until those tests are done and IN! Save your energy for THEN!
      In the meantime? I can only suggest getting yourself some duct-tape or vet-wrap in colors you prefer to help keep you together!:o I do know for me, at times I’d really would have liked a full body wrap!
      From experience tho? The cancer thing, brought my two sisters and myself back together after a ‘family dispute’ decades ago and it’s bonded us for the better, tho some places are ‘touchy’ as can be expected. IN my case? The cancer IS an inherited issue. The CIDP is not so far- a ‘family’ thing, as I’m the youngest of many siblings and the only one lucky enough to get ‘it’. Plus I’ve got more cousins than I can count on fingers and toes who don’t have anything like this.
      Don’t dig too far into research yet…your test results could take your problems into a whole different set of things to learn about, so don’t crowd your mind until you know WHAT you have to crowd your mind about. Conserve your strength for then. Definitely you’ve enough on your plate now!
      Sending you strength and hope and heart that I can spare thru the ether…hope you get some of it?

    • Anonymous
      February 23, 2010 at 12:56 am

      I tried sending you a PM this morning but your box is full. Sorta symbolic ay? I am so sorry I have been out of touch and I think of you so often. I am so very sorry that you keep getting the crap beat out of you by life. Wow. I hope this year turns around quickly for you. Try, as hard as I know it is, to NOT stress over this unknown. One minute at a time and just whats in front of you. Thats my motto.
      Hang in,