No Cidp, But Charot Marie Tooth Disease
AnonymousApril 19, 2009 at 8:37 pm
In 2006 the VA DX me with CIDP, since then I have been getting IVIG for atleast 15 months. I have constantly been in doubt about having CIDP because I didn’t seem to have most of the classic signs I have heard others talk about.
In Feburary I was able to locate a Dr. In Cloumbia, Mo who has 7 other patience he treat very aggresively for CIDP. He has retaken every test and extensive research into my DX. My reflexes are almost to good he says. somehow he has compared my 2006 and 2007 nerve conduction studies to the one he just took and looking at my symptoms and a long list of other things and have come to the conclusion, that I may have Charot Marie Tooth Disease. (FROM WHAT I HAVE READ THIS IS WORSE THAN CIDP, THERE ARENT ANY TREATMENTS FOR THIS) The kicker to this story and somthing the Dr did not know, was that some years ago a Dr told my mother she had this disease, and another Dr came along and said she did not.
This Disease is something that Is passed down to children, like a 50 50 chance and just because the mother has a mild form doesn’t mean you children will have a mild form, just like my mother has many problems with her feet and weakness in her hands, she doesn’t have it in her legs like me. This Is so strange and scarry to me. I just don’t know what to think now. The Dr. Is having a complete CMT test done on me, but it cost 15,000 and most insurance don’t cover it, so guess who wont be getting the test done. WHO CAN AFFORD THIS! and just when I felt like I was finally getting over greiving over having CIDP, here comes CHAROT MARIE TOOTH DISEASE, ALSO WHAT DOES THIS DISEASE HAVE TO DO WITH ANY TEETH. I HAVEN;T FOUND ANYTHING.
AnonymousApril 19, 2009 at 9:50 pm
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?
AnonymousApril 20, 2009 at 1:07 am
If you’ve been on IVIG for 15 months I’m guessing your nerves have repaired some so your EMG should have improved.
If you’ve improved while being on IVIG then my guess is you have something autoimmune. Whether it’s CIDP or not, I don’t know.
I’ve never heard of CMT having anything to do with teeth. Are you having teeth issues?
AnonymousApril 20, 2009 at 9:05 am
lol…no I haven’t had any teeth problems and I found out that one of the Dr who discovered this disease last name is Tooth. There Is something so weird about all of this, I just can’t describe it. I also have a pretty bad case of Anxiety which can account for the many times I feel shaky inside, to where I thought I was having some type of tremor. I have heard you can have Tremors with CIDP. Even with all the IVIG I have had, I only really saw and improvement in the tiredness but I would always still feel shaky until I take me Anxiety medication and at that time it would go away. My nurse kept a close account of my symptoms before,after,and during my Infusions even in between infusions. She finally told me that although she Is not a Dr. that I never seemed to have any problems that most if not all of her other CIDP patients have. I do know there Is something wrong, hopefully my specialist will get to the bottom of it.
AnonymousApril 20, 2009 at 2:21 pm
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?
AnonymousApril 20, 2009 at 5:04 pm
Hey, I did some more reading on CMT and I may have been wrong about being like your mother as some places said that and others said that each person is different even in the same family. But CMT is quite common and it is rare for people to lose ability to walk with this.
First suggestion–google Charcot Marie Tooth and there is a Charcot-Marie-Tooth Association kind of like this one that has some good information.
Second, if there is a chance to argue about the insurance paying for the testing, the best argument is that if this were CMT, you would not need immunoglobulin infusions any more. Since these are really expensive, the insurance might would pay for the CMT testing in order to no longer have to pay for the immunoglobulin. I am not being cynical–just practical in that that is the way the world works–if you point out why it is a potential huge benefit for THEM, they might do it.
AnonymousApril 21, 2009 at 8:20 am
Yes I do have Tremor or some type of shaky feeling, The only thing that help me Is Ativan or clonazapram and then It all goes away. My Dr seems to think it’s not tremors but Anxiety, she says anxiety can make you feel like that and wonder if it is Tremor, would the shaking stop after taking anxiety medication?
AnonymousApril 22, 2009 at 7:02 am
But you can’t take Ativan and Zanax together. Only one or the other. I liked the Zanax better but it can be an addicting drug. The doctor’s now are trying the other drugs like Clonazepram and Ativan because the effects are not as bad as Zanax. I take the Clonazapram too! That helps also. And the Gabapentin too helps with that numbness and tingling crap! That is what I call it! Hate that numbness and tingling stuff. They tried to say Anxiety on my shaking too! I keep telling them though it’s like a Parkinsons type of tremor. A constant area on one side that the nerves are so weak that they tremor and it drives me nuts. I am left handed too and that is where I shake alot. When I take the Zanax and rest a few days not doing nothing it seems to improve some. It comes and goes! But the rest is what helps it. My nervous system when it gets attacked causes me all kinds of problems. The bowels go nuts, vommiting comes and I get a nervous exicitable feeling in my body. Almost like Anxiety but I know it’s not Anxiety. It’s the nerves becoming overactive causing my body to go completely haywire. I know the difference between my anxiety attacks and the nervous system going haywire. And this is surely not anxiety. Its a motor nerve that has gone haywire not working properly. It will eventually heal up some but never really completely goes away. Steroids help too but I don’t know if they treat you with that. Might pay to ask! I will keep you in my prayers and hope things improve for you! Sometimes when they know what you have it become then a trial and error of finding the right meds that will work for you or ease that nasty feeling. Sad thing is that we sometimes don’t always get cured but have some meds that make our lives a bit easier to handle! Good luch my friend! I hope that now they know what is going on with you that you start to improve as the days go by! Some people with Charcott Marie Tooth depending on which trait they have end up coming to a stopping point after so many years. The damage you have might already be stopped or still active. When it stops you might just see an end to the damage being done. But it is still there and what damage that got done really does not improve completely. I know a few that have mild cases and a few that are not so mild. But it’s a pain the the A having. Any nerve damage disease is a pain. I hope that they get you on the right track and get you feeling better! Big hugs coming your way!
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