NEURO appt today// Update on me// I do have CIDP and "maybe" CMT

    • Anonymous
      April 2, 2007 at 6:15 pm

      Hello Family,
      I went to see my new new neurologist today and this time, I asked my questions. My diagnosis of CIDP in 1998 is correct and the new neurologist did agree that I am still stable and am showing no signs of a relapse or return of progression. I have been off all CIDP medications for 3 1/2 yrs now and it’s my choice whether I am satisfied with my present condition or want to try IVIG again to see if it will re-boot me.

      This new neurologist put a “maybe” on his diagnosis of Charcot Marie Tooth. He thinks that “maybe” I also have a very rare form of CMT that there is no test for, so the bloodwork done for the other kinds, won’t show anything. Since CMT is another progressive syndrome and like CIDP has no cure, it’s my choice whether I want to accept that I have CMT, because as far as I know, physical therapy is the only treatment that can help. And I have in the past gone for PT, and will be returning to PT very soon. Right now, I don’t even know if I should try to research the very rare forms of CMT.

      Using AFO’s is my choice too. The doctor agreed that I do well enough with my ankle boots, so I’d only try AFO’s if I can find a pair I will keep on my feet. Once the PT clinic has a chance to observe my gait, I will talk to them about AFO’s.

    • Dawn Kevies mom
      April 2, 2007 at 10:52 pm

      HI Liz! Remember, if you want to speak with a very lovely lady who is well versed in cmt, contact me. Dawn, Kevies mom:)

    • Anonymous
      April 3, 2007 at 7:21 am

      This sounds like “good news”, Liz… At least YOU are in the driver’s seat now rather than a disease that is forcing you to do this and that… 🙂 Have you made any decisions on IVIG..???

      Aimee

    • herself
      April 3, 2007 at 8:10 am

      On the AFOs, I hated the plastic ones they started me on but last summer I was fitted with ToeOFF, a much lighter weight, less cumbersome brace for the foot drop. It’s easier to find shoes that fit and I can be on my feet alot longer. You might want to look into those and see if they’d work for you.

    • Anonymous
      April 3, 2007 at 8:12 am

      Hi Liz,

      I’ve been diagnosed with BOTH conditions — CIDP and CMT Type 1a. There are probably more of us than we realize. My neuro ID’d the overlap right away and then proceded to prove it with an extensive suite of tests, including genetic tests for the CMT and going all the way to a nerve biopsy for the CIDP.

      What he doesn’t know is where one ends and the next begins. Like your doctor, he says I’m in the driver’s seat about treatment. I have found only one article that focuses on patients with both, an Oxford study.

      Frankly, I’m not sure which is the more serious condition. My neurologist seems to think the CMT is worse news than CIDP, but I don’t share this opinion. I have a significant pattern of CMT in my family, and the extent of our disabilities varies dramatically. My case is pretty mild, all things considered, much like my mother’s. She’s approaching 70 now, and just starting to get autonomic involvement.

      I wear an SFO on one foot because I’ve lost the nerve that feeds the outside of the foot so it began to twist up and in . This is from the CIDP, not the CMT. So my brace provides lateral support instead of addressing foot drop (so far).

      I have noticed a pattern of decline in 4 specific events: puberty, year 1 college, preganancy, and just recently, making my recurrences about 10 years apart.

      For now, I’ve stopped with the IVIG — its been almost 4 months now and I’m holding steady.

      I’ll be interested in seeing how your case procedes!!

      Helen 🙂