Re: HAVE YOU BEEN TESTED FOR CMT?

[Guest guest]

Thanks for the info Fyfer. Welcome to the group. I am sorry to hear

that you were diagnosed so late in the progression of this disease

and that you are so physcially challenged now.

I am sure members will want to read up a little more on this disease.

Here is a website for an organization which answers many questions:

http://www.charcot-marie-tooth.org

I don't know if you were addressing this post to Pat in

particular...but as I was looking through this website I came upon

this article regarding neuropathy and pain, and having just read her

post on how difficult it is to sleep and function well when in pain.

is right, a good pain management doctor can make all the

difference in the world when you are suffering chronic issues as you

are.

Here is the pain article:

http://www.charcot-marie-tooth.org/about_cmt/pain.php

Take Care, Cam

[Guest guest]

Thanks for your post. It would be interesting to know what the

association is between scoliosis and CMT, as well as how much overlap

there may be. As I understand it, there are various kinds of CMT, and

the condition can be caused by several different genetic mechanisms.

Do you know if it is unusual to get a diagnosis as late as you did?

This must have come as quite a shock to you. It sounds as if you are

getting capable and knowledgeable medical care now, however.

A number of group members -- and I am one -- have complained of

peripheral neuropathy. It's a little unnerving to think that some of

us might have a genetic condition as the underlying cause,

beyond " the usual suspects " we usually hold responsible for our

numbness and tingling.

I found an interesting commentary on CMT at

http://www.mdausa.org/publications/fa-cmt.html

Best,

>

> I am a 58yo woman who was diagnosed with Charcot-Marie-Tooth

Disease on

> Jan. 15, 2008, only two days ago! It was inherited from my father

and

> I've had it since I was at least 14yo when I was diagnosed with

> scoliosis. CMT causes spine and other bone deformities. The delay

in

> the diagnosis has resulted in a severe case of CMT, (and Scoliosis,

for

> which I had surgery in 2002), whereby I have total numbness in my

feet,

> with numbness having gradually progressed up into my thighs. It is

> also now in my arms and hands. I can hardly walk or open a jar or

a

> box of macaroni. If my disability might have beesn diagnosed and

> treated even a few years ago, some of my disability might have been

> slowed or avoided. If you have idiopathic scoliosis (no known

reason

> for it, as I did) AND/OR have never been tested for CMT, now is

time!

>

> CMT is a neurological, progressive, debilitating, painful disease

> inherited from one or both parents who are carriers. Scoliosis is

only

> part of it!

>

[Guest guest]

Hi, , The correlation is close! CMT CAUSES scoliosis because CMT causes deformity. Only a few months ago, I heard or read something that I thought was very strange. It doesn't seem strange to me at all now: scoliosis is a brith defect. Well, since CMT is a genetic disease, that makes scoliosis a birth defect!! ANYONE with ANY KIND of tingling, pins and needles, deep itching, numbness, a tremor, aches and pains in the joints anywhere may have CMT. It's such an easy test and worth every penny. Lana Rasche <elizabethrgonzalez@...> wrote: Thanks for your post. It would be interesting to know what the association is between scoliosis and CMT, as well as how much overlap there may be. As I understand it, there are various kinds of CMT, and the condition can be caused by several different genetic mechanisms. Do you know if it is unusual to get a diagnosis as late as you did? This must have come as quite a shock to you. It sounds as if you are getting capable and knowledgeable medical care now, however.A number of group members -- and I am one -- have complained of peripheral neuropathy. It's a little unnerving to think that some of us might have a genetic condition as the underlying cause, beyond "the usual suspects" we usually hold responsible for our numbness and tingling.I found an interesting commentary on CMT at http://www.mdausa.org/publications/fa-cmt.htmlBest,--- In , "fyfer1949" <fyfer1949@...> wrote:>> I am a 58yo woman who was diagnosed with Charcot-Marie-Tooth Disease on > Jan. 15, 2008, only two days ago! It was inherited from my father and > I've had it since I was at least 14yo when I was diagnosed with > scoliosis. CMT causes spine and other bone deformities. The delay in > the diagnosis has resulted in a severe case of CMT, (and Scoliosis, for > which I had surgery in 2002), whereby I have total numbness in my feet, > with numbness having gradually progressed up into my thighs. It is > also now in my arms and hands. I can hardly walk or open a jar or a

> box of macaroni. If my disability might have beesn diagnosed and > treated even a few years ago, some of my disability might have been > slowed or avoided. If you have idiopathic scoliosis (no known reason > for it, as I did) AND/OR have never been tested for CMT, now is time!> > CMT is a neurological, progressive, debilitating, painful disease > inherited from one or both parents who are carriers. Scoliosis is only > part of it!>

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[Guest guest]

Oh, , as far as late diagnosis goes, I suspect it happens all the time. Nobody asks about it and until the feet get these symptoms, its far advanced. Mucous sac lesions on the hands can be a symptom, they look like big pimples. That's osteoarthritis, but disforming, too I have had them on both forefingers for at least a year, maybe two years. I soften them, rub them until they 'burst' , rub them some more to get out all the clear, sticky stuff, put neosporin on them with a bandaid and get relief for up to a month. Yup, my own surgery! hahahahah! If you have tingling in your feet, you definetely have some type of neuropathy. You need to get some attention for that. You don't want to lose your strength so bad you can't walk or open a box of macaroni! Lana Rasche

<elizabethrgonzalez@...> wrote: Thanks for your post. It would be interesting to know what the association is between scoliosis and CMT, as well as how much overlap there may be. As I understand it, there are various kinds of CMT, and the condition can be caused by several different genetic mechanisms. Do you know if it is unusual to get a diagnosis as late as you did? This must have come as quite a shock to you. It sounds as if you are getting capable and knowledgeable medical care now, however.A number of group members

-- and I am one -- have complained of peripheral neuropathy. It's a little unnerving to think that some of us might have a genetic condition as the underlying cause, beyond "the usual suspects" we usually hold responsible for our numbness and tingling.I found an interesting commentary on CMT at http://www.mdausa.org/publications/fa-cmt.htmlBest,--- In , "fyfer1949" <fyfer1949@...> wrote:>> I am a 58yo woman who was diagnosed with Charcot-Marie-Tooth Disease on > Jan. 15, 2008, only two days ago! It was inherited from my father and > I've had it since I was at least 14yo when I was diagnosed with > scoliosis. CMT causes spine and other bone deformities. The delay in

> the diagnosis has resulted in a severe case of CMT, (and Scoliosis, for > which I had surgery in 2002), whereby I have total numbness in my feet, > with numbness having gradually progressed up into my thighs. It is > also now in my arms and hands. I can hardly walk or open a jar or a > box of macaroni. If my disability might have beesn diagnosed and > treated even a few years ago, some of my disability might have been > slowed or avoided. If you have idiopathic scoliosis (no known reason > for it, as I did) AND/OR have never been tested for CMT, now is time!> > CMT is a neurological, progressive, debilitating, painful disease > inherited from one or both parents who are carriers. Scoliosis is only > part of it!>

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