HAVE YOU BEEN TESTED FOR CMT?

[Guest guest]

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]

Lana,

What a shock that must have been for you to be diagnosed with

something like this! I'm glad that you shared it with the rest of

us. It never hurts to be too informed or overly cautious when it

comes to our health - we don't get do-overs!

I just wanted to mention that I have many of the symptoms listed on

the various websites that I've looked up about CMT. I have extreme

leg weakness, drop foot, some arm weakness, definately the

numbness/tingling, bladder dysfunction, and very cold hands & feet.

However, I've been diagnosed with a progressive form of multiple

sclerosis - which also involves demyelination of nerve cells. Do you

know if CMT causes lesion in the brain & spinal cord? One of the

only odd symptoms that I have that the MS diagnosis cannot seem to

explain is the very cold hands & feet. Every time a nurse or doctor

notices that, they freak out and check my pulse & circulation down

there - which is always fine.

I think you mentioned in your previous post that there was a simple

test to check for CMT, but I thought I read that the genetic tests

were thousands of dollars and that insurnace companies typically

won't cover them...?

Anyways, thanks for posting the information about this particular

disorder, and I hope that you are able to find some relief!

> >

> > 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!

> >

>

>

>

>

>

>

> ---------------------------------

> Never miss a thing. Make your homepage.

>

[Guest guest]

Dear , I appreciate your post. Yes, it was a shock, only a few days now, and I've begun to 'accept' it and not be so 'down.' I have drop foot, too. CMT is related to MS and ALS. As for the genetic testing, that's the blood test. But, you can get referred to a neuro lab for an EMG, which would be covered by insurance just as an xray or EKG would be. Might be just as easy not to have the blood test in the beginning, as the EMG is the determinant for actual diagnosis. The blood test would tell if a person has the gene for CMT, but that person may not actually have CMT, but, rather, may be 'just' a carrier, still able to pass it to 50% of the children. For those with insurance problems with genetic testing, the EMG is the way to go. They put electrodes on your a leg and one arm (if one has CMT on one side, it's on the other side too, and one side may be worse. In my case, the right is worse, something

I just know from the symptoms. The test was done on my left limbs.) and send electric impulses to them to test to see how long it takes for the impulse to reach the brain and back. The slower the response in the nerves and muscles, the more severe the disease. Hope this helps to answer your questions. Lanarebeccamaas <rebeccamaas@...> wrote: Lana,What a shock that must have been for you to be diagnosed with something like this! I'm glad that you shared it

with the rest of us. It never hurts to be too informed or overly cautious when it comes to our health - we don't get do-overs! I just wanted to mention that I have many of the symptoms listed on the various websites that I've looked up about CMT. I have extreme leg weakness, drop foot, some arm weakness, definately the numbness/tingling, bladder dysfunction, and very cold hands & feet. However, I've been diagnosed with a progressive form of multiple sclerosis - which also involves demyelination of nerve cells. Do you know if CMT causes lesion in the brain & spinal cord? One of the only odd symptoms that I have that the MS diagnosis cannot seem to explain is the very cold hands & feet. Every time a nurse or doctor notices that, they freak out and check my pulse & circulation down there - which is always fine.I think you mentioned in your previous post that there was a simple test to check for CMT,

but I thought I read that the genetic tests were thousands of dollars and that insurnace companies typically won't cover them...?Anyways, thanks for posting the information about this particular disorder, and I hope that you are able to find some relief!> >> > 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!> >> > > > > > > ---------------------------------> Never miss a thing. Make your homepage.>

Never miss a thing. Make your homepage.

[Guest guest]

Lana,

Is an EMG the same thing as a nerve conduction test or maybe as an

evoked potential? I had a nerve conduction test done on a leg before

I was diagnosed with MS, and that came back normal. I got a copy of

this summer's surgical report, and it was noted that motor evoked

potentials of my legs were poor throughout the whole operation.

And interestingly enough, the evoked potentials dropped to zero

signal at the end of the surgery, and they re-opened me to check to

see if I had any compression anywhere, but they couldn't find

anything wrong and closed me back up. That's nice to know! I knew

about a couple of other problems that happened during the surgery,

like a dural tear and such, but I hadn't heard that one before! I

apparently have quite an abnormal anatomy in my pelvis, making it

difficult to identify certain structures that they needed

as " landmarks " to place the screws, and also some severe rotation

below my fusion made for difficulties during the surgery too. It's

so interesting to read about these things instead of hearing about

them from the doc himself

>

> Dear , I appreciate your post. Yes, it was a shock, only a

few days now, and I've begun to 'accept' it and not be so 'down.' I

have drop foot, too. CMT is related to MS and ALS. As for the

genetic testing, that's the blood test. But, you can get referred to

a neuro lab for an EMG, which would be covered by insurance just as

an xray or EKG would be. Might be just as easy not to have the blood

test in the beginning, as the EMG is the determinant for actual

diagnosis. The blood test would tell if a person has the gene for

CMT, but that person may not actually have CMT, but, rather, may

be 'just' a carrier, still able to pass it to 50% of the children.

For those with insurance problems with genetic testing, the EMG is

the way to go. They put electrodes on your a leg and one arm (if one

has CMT on one side, it's on the other side too, and one side may be

worse. In my case, the right is worse, something I just know from

the symptoms. The test was done on my

> left limbs.) and send electric impulses to them to test to see how

long it takes for the impulse to reach the brain and back. The

slower the response in the nerves and muscles, the more severe the

disease.

>

> Hope this helps to answer your questions.

>

> Lana

>

[Guest guest]

Yes, , nerve conduction test. CMT is related to MS, but not as bad, in my opinion. Haven't done any research on MS, but could MS have caused your scoli? CMT is a bone deforming disease, so it definitely does cause scolio. ljrebeccamaas <rebeccamaas@...> wrote: Lana,Is an EMG the same thing as a nerve conduction test or maybe as an evoked potential? I had a nerve conduction test done on a leg before I was diagnosed with MS, and that came back normal. I got a copy

of this summer's surgical report, and it was noted that motor evoked potentials of my legs were poor throughout the whole operation. And interestingly enough, the evoked potentials dropped to zero signal at the end of the surgery, and they re-opened me to check to see if I had any compression anywhere, but they couldn't find anything wrong and closed me back up. That's nice to know! I knew about a couple of other problems that happened during the surgery, like a dural tear and such, but I hadn't heard that one before! I apparently have quite an abnormal anatomy in my pelvis, making it difficult to identify certain structures that they needed as "landmarks" to place the screws, and also some severe rotation below my fusion made for difficulties during the surgery too. It's so interesting to read about these things instead of hearing about them from the doc himself >> Dear , I appreciate your post. Yes, it was a shock, only a few days now, and I've begun to 'accept' it and not be so 'down.' I have drop foot, too. CMT is related to MS and ALS. As for the genetic testing, that's the blood test. But, you can get referred to a neuro lab for an EMG, which would be covered by insurance just as an xray or EKG would be. Might be just as easy not to have the blood test in the beginning, as the EMG is the determinant for actual diagnosis. The blood test would tell if a person has the gene for CMT, but that person may not actually have CMT, but, rather, may be 'just' a carrier, still able to pass it to 50% of the children. For those with insurance problems with genetic testing, the EMG is the way to go. They put electrodes

on your a leg and one arm (if one has CMT on one side, it's on the other side too, and one side may be worse. In my case, the right is worse, something I just know from the symptoms. The test was done on my> left limbs.) and send electric impulses to them to test to see how long it takes for the impulse to reach the brain and back. The slower the response in the nerves and muscles, the more severe the disease.> > Hope this helps to answer your questions.> > Lana>

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