Hi Stacey,
Dr. Barohn is on the board of directors for this foundation and I also think that he was at the Chicago symposium. Not much of a description, but if it helps, he wears glasses.

Maybe your doctor and Dr. Barohn would agree to confer.

What they mean by uniform slowing in CMT is that both sides and nearby nerves are slowed about the same. This is because the problem is one of the nerves themselves. With CIDP, one area may be slower than a nearby area and there can be some differences in the sides of the body in the same nerve. This is because the damage happens outside the nerve–the immune attack on the myelin and what is damaged is a bit patchy because some places there is more damage than other nearby places. At least this is what I understand. I have read enough about GBS/CIDP to feel pretty comfortable about the variability seen there and that it fluctuates some over time, but do not know that much about CMT. What I have read is that the slowing is very much alike in similar areas of the body and it does not vary to get better and worse since the process is slowly progressive and most of CIDP is episodic with periods of badness and periods where peace pervails.

I should clarify something else. There are some forms of CMT which are autosomal dominant, so that if a parent has it, the child has about a one in two chance of getting it also. There are other forms that are autosomal recessive, in which a person has to inherit a problem gene from both parents so that you and your sister could have gotten CMT but it would be very unlikely that the children of either of you would get CMT and require that the dads would have to also be carriers. If this makes no sense, the important point is that sometimes a parent can have a disease
(from inheriting an abnormal gene from both of their parents), but the children are at almost no risk of having that illness because to do so would mean that the child’s other parent would also have to carry the same abnormal form of the disease. That is, if you have some forms of CMT, your kids almost certainly cannot get it.

Its kind of late to make sense, so if this does not I will try again tomorrow.
WithHope for a cure of these diseases

Stacy,

You have my thoughts and prayers as you move forward through this. It has to be incredibly frustrating.

I’m going to ask a stupid question, for the benefit of myself and possibly other “newbies”…by “CMT”, are you referring to “Charcot-Marie-Tooth Syndrome”? Just want to be sure, as I don’t see it specifically named in your posts, only referred to as “CMT”.

Thanks,

Elmo

Hello LaMeka,
I can relate to how you feel about being told you have CIDP and then have that diagnosis changed to CMT, another scary illness with a strange name.

I do have CIDP! That diagnosis was never questioned, but about five years ago I had to change neurologists because my neurologist moved to another state and the new neurologist took one look at my feet and said you have CMT as well. I don’t know if I really believe that because I’ve gone through a total of 8 neurologists and only the one doctor said I have CMT. Does it make sense that 7 neurologists could miss a diagnosis of CMT, I don’t think so. Plus, no-one in my family and that’s going back generations had CMT.

But, sometimes that little seed of doubt creeps in because my feet are effected the most. When I’m sitting relaxed, my left foot turns in. I have almost no forward movement in my feet. CMT symptoms or CIDP?

Like many diseases in medicine, this was named after the three people that first described it-Dr Charcot, Dr Marie, and Dr Tooth. You are right in that it has nothing to do with teeth!

Look on the neuropathy association website–www.neuropathy.org under hereditary neuropathies and they describe a lot about CMT and variants.

Even though you say that there is no treatment for CMT, my understanding is that most cases are not nearly as bad nor as rapidly progressive as CIDP except for those that start showing symptoms in early childhood–which is not the case for you even though you are relatively young. There are also a number of different mutations, but IF your mother had it, you might expect to be relatively like her although a lot of different things add in to alter the expression pattern to be somewhat better or worse in members of a family apparently. Have you talked with the neurologist about what to expect?

WithHope

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

Hi Liz,
We also were given an initial dose of CMT for my son. I am sure you read about all of the other typical symptoms ie. hammertoes, drop foot, also, are there any other family members w/drop foot? As I mentioned last time I wrote to you, there is this wonderful lady in California that helped me when I thought my son had CMT and she said she would be happy to talk with you. Also, Muscular Dystrophy can give you tons of info as they did me (they helped to confirm that we did not have cmt and should quickly seek another neuro for correct dx.) Also, MD will help you pay any bills that you have if your insurance does not pay. I did join a CMT forum and talked with many people. I think that while you are seeking another opinion, other cmt people might be able to help you. Good luck and let me know if you would like that ladies number.
Sincerely,
Dawn

First off, I do not believe that you have CMT, as I was tested for that right away. I am sure you were in the past as well. It is progressive, many of the people on the peripheral neuropathy forum have it, & deteriorate fairly rapidly. You would not have remained stable if you did indeed have CMT. Secondly, just my opinion, but at this point I think IVIG would be a waste of time. You always said that you felt it was like water dripping into you (I felt the same way, & I was right.) After so many years, especially over 3 years of being stable, what could it possibly do for you now?

I think you have always had the foot drop, that is why you wear high top boots all day, so that your feet don’t point downwards. Same concept as wearing AFOs really. I guess after almost 5 years of studying this illness, I have come to the conclusion in both CIDP & GBS, that once the antibodies are completely arrested, or the syndrome goes into remission, that there is actually a “two year window of healing.” I never believed it before, when the chemo finally arrested my CIDP, as it was so exciting to finally be seeing so many improvements after 2 1/2 years. But I would have to admit to myself now, that I have not seen any more real improvements after those first two years. Little things maybe, mostly me relearning how to do old things.

Personally, I think at some point I just accepted my dx as well as my prognosis & have just moved on with my life. I do what I am physically capable of, eat right, take vitamins, attend water aerobics twice a week, etc. Gone are the days of skating, skiing, tennis, etc. but that is OK. I can still have a good life, even with my limitations from CIDP…