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Hi Francesca,

 

I don't belong to a support group, but there is one in San Diego that just

started up last month.  If I were to attend one, it would probably be that one,

since it's the closest, but it's still over an hour drive, which is challenging

for me.  A member of this forum who lives in San Diego was kind enough to drive

up to my area in the summer, so I had an opportunity to meet someone with CMT

(other than a family member) for the first time, which was wonderful.

 

As for my prognosis, my neurologist only says that I will not get better.  He

gives me pain meds and tells me to get in the pool when I'm able to fight

further decline, but he does not predict the rate of decline for the future.  I

would be suspicious of any doctor who was willing to forecast how my disease

will progress, since there are too many variables and the disease affects

everyone differently.

 

Your emotional distress is understandable.  It's usually either grieving the

loss of some physical ability (even small changes) or fear of the future (how

bad is this going to get).  You have friends here who can relate to what you're

experiencing.

 

 

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Thank you .

Today I went to my neuro and he did a full nerve conduction test and EMG on my

distal muscles and my hands. He then called in two

colleagues who are specialists in degenerative neuro muscular diseases. After

looking at the EMGS etc they all three concurred that I do not have CMT. My

numbers are way way too high they say to be CMT...and my tests on my hands

showed a slight slowness but not CMT.

So......what is it? They are sending me to Genetics and they will meet again

this week and determine what tests I am to take. I am happy if it is not CMT I

think but now worried that it is something much worse but they did not think so.

One of the doctors kept saying SMA (spinal muscular atrophy) and if you google

that, in

children it is fatal but it says that in adults a person can age normally, and

even have children.

So I am so tired and confused and I still want to meet others with CMT because

just in this short time I have been with this group, there are others that

present the same way I do but they have a

positive diagnosis for CMT and now...I don't...if the EMG results are to be

believed.

Francesca

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

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Francesca,

 

I'm so sorry for what you are going through.  It's emotionally challenging to go

through a long diagnostic process and there's lots of worry as to what the end

result will be.

 

It sounds like you are in good hands and your team of doctors is continuing to

search for a diagnosis for you.  However, if you feel like it might benefit you

to get another opinion, there's nothing wrong with doing so.  You're entitled to

copies of your medical records and test results.  You can take them to another

physician for a second opinion, if you feel so inclined. 

 

Did your doctors rule out CMT based on the nerve conduction results only?  I'm

wondering because it's possible for people with CMT Type 2 and Type X to have

normal or slightly slowed NCV results.  Perhaps there were other things they

looked at as well, but it might not hurt to ask them.

 

Here's a reference to Dr. Bird's write-up about CMT Type 2, in case it helps:

 

http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene & part=cmt#cmt.Establishin\

g_the_Dia

 

" In CMT1, the most common CMT subtype, NCVs are very slow and peripheral nerves

may be palpably enlarged. This is not true of CMT2 or CMTX. "

 

I wish you the best in solving this diagnostic mystery.  I hope you get your

answer soon.

 

 

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Hi Francesa,

I feel for you. Even after my childhood CMT diagnosis in the early 1960s, I was

rediagosed with Muscular Dystropy, and then Frederich's Ataxia, before being

rediagnosed AGAIN with CMT. What emotional distress as a teen! (all this was

done with a group of doctors at UCLA) My EMG/NCV's are all within the normal

range, and showed reinnervation which I found out indicate CMT 2. (Reinnervation

is nerves rewiring themselves) But I have not had genetic testing. Genetic

testing is something new - well as of the 1990s, and I was already 'into life'

so haven't had it.

There is no history of CMT in my family, and any other relatives that I remember

had no signs/symptoms whatsover. My sibling was adopted, so there's no genetic

connection.

Bearing that in mind, my curent neurologist has concluded my CMT is of a

recessive inheritance. Although he also adds it could be a 'de novo' -

spontaneous mutation. Research on primates has suggested the CMT gene has been

in the 'human family' for 6 - 7 million years.

http://www.accessexcellence.org/RC/VL/GG/recessive.php

http://ghr.nlm.nih.gov/glossary=denovomutation

There are so many different types of CMT

http://neuromuscular.wustl.edu/time/hmsn.html

Now you must take charge of getting a confirmed diagnois. Ask first for a skin

biopsy. Then ask for the complete CMT DNA panel blood test. Don't let doctors *

tell you * what tests they want. If a doctor suggests a spinal tap, question

that an put if off as long as you can. It is used as a diagnostic tool to rule

out disorders like MS, and is somewhat invasive. I know, I had it once - my

fluid was clear.

Ask to be tested for CIDP too.

CMT is a wacky disorder, while we all share some common symptoms and different

ages of onset and diagnosis, it's still CMT - also known as Hereditary Motor

Sensory Neuropathy. HNPP or Hereditary Neuropathy with Liability to Pressure

Palsies is somewhat similiar and has been described as a 'genetic opposite' of

CMT 1A.

You may also want to consult with another neurologist for an opinion after

reviewing your tests so far or for more guidance. I can recommend a good one in

Santa Barbara.

Gretchen

>

> Thank you .

>

> Today I went to my neuro and he did a full nerve conduction test and EMG on my

distal muscles and my hands. He then called in two

> colleagues who are specialists in degenerative neuro muscular diseases. After

looking at the EMGS etc they all three concurred that I do not have CMT. My

numbers are way way too high they say to be CMT...and my tests on my hands

showed a slight slowness but not CMT.

>

> So......what is it? They are sending me to Genetics and they will meet again

this week and determine what tests I am to take. I am happy if it is not CMT I

think but now worried that it is something much worse but they did not think so.

One of the doctors kept saying SMA (spinal muscular atrophy) and if you google

that, in

> children it is fatal but it says that in adults a person can age normally, and

even have children.

>

> So I am so tired and confused and I still want to meet others with CMT because

just in this short time I have been with this group, there are others that

present the same way I do but they have a

> positive diagnosis for CMT and now...I don't...if the EMG results are to be

believed.

>

> Francesca

>

>

>

>

>

>

>

>

> [Non-text portions of this message have been removed]

>

> [Non-text portions of this message have been removed]

>

>

>

>

>

>

>

>

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Francesca,

When I was first being diagnosed, they called it Kugelburg Welander for several

years, which I believe now they call SMA. Years later, I wass told they did not

think I had CMT and sent me for genetic testing for SMA. After those results

came back negative, they went back to thinking I have CMT and maybe a new type.

Who knows?

For the longest time, my hands did not show signs of CMT but the EMG for my legs

definately showed axonal nerve problems.

Jackie

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Gretchen

Thank you for this email. I will take heed to everything you have said here,

especially dealing with my doctors. I have had spinal tap, a muscle biopsy

and so many blood tests i can't remember everything. all these years we just

sort of settled on CMT of the distal muscles and until this year, after a number

of falls and the change in the appearance of my hands, we really did nothing

much other than EMGS every so often. I feel in my heart that I do have CMT even

if the science doesn't support it. The last words out of their mouths was

Spinal Muscular Atrophy so we will see what the genetic testing says. In the

meantime, i still want to come

up there by you for the meeting of your group in January. Please let me know

when.

Thank you

Francesca

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Thank you for your support. I am going to go up to Santa Barbara

to Gretchen's group in January but I live an hour north of you and I go to

San Diego twice a year. Maybe I could find out about that group and meet

anyone from the group when I go down to Pugfest.

This last week I have just sort of have been in shock a bit being told that

I did not have CMT when I have lived with that thought for so long. I

think after the genetic testing comes about, we will or might have a better

idea of what is going on....

Francesca

In a message dated 11/2/2009 10:14:45 A.M. Pacific Standard Time,

agraham2k@... writes:

Hi Francesca,

I don't belong to a support group, but there is one in San Diego that just

started up last month. If I were to attend one, it would probably be that

one, since it's the closest, but it's still over an hour drive, which is

challenging for me. A member of this forum who lives in San Diego was kind

enough to drive up to my area in the summer, so I had an opportunity to

meet someone with CMT (other than a family member) for the first time, which

was wonderful.

As for my prognosis, my neurologist only says that I will not get better.

He gives me pain meds and tells me to get in the pool when I'm able to

fight further decline, but he does not predict the rate of decline for the

future. I would be suspicious of any doctor who was willing to forecast how

my disease will progress, since there are too many variables and the

disease affects everyone differently.

Your emotional distress is understandable. It's usually either grieving

the loss of some physical ability (even small changes) or fear of the future

(how bad is this going to get). You have friends here who can relate to

what you're experiencing.

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

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Jackie...

thanks....my doc did mention SMA and i think the muscle biopsy might have

supported that. we will see what happens. in the meantime, i am trying to

carry on with normal days and not over do my workouts like i i did this

week and send my body in to a fit of muscle spasms. my task is to keep my

weight down and it is so hard to do that.

F

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