Re: white matter lesions

[Guest guest]

Donna,

In CMT research has demonstrated that white matter lesions showing on an MRI

might be indicative of CMT Type X and/or possibly CMT 1A. Type X and 1A both

have genetic tests that are available.

~ Gretchen

[Guest guest]

Hi ,

Besides CMT Type X, there have been a small handful of patients with

CMT 1A that have shown white matter lesions. Read this abstract

below, because it also mentions autoimmunne issues, you may be

interested:

Eur Neurol. 2004;51(3):168-71.

Brain white matter lesions in an italian family with charcot-marie-

tooth disease.Sacco S, Totaro R, Bastianello S, Marini C, Carolei A.

Department of Neurology, University of L'Aquila, L'Aquila, Italy.

Type 1A, the most common form of Charcot-Marie-Tooth (CMT1A)

disease, is characterized by demyelination of the peripheral nervous

system. So far, only a few cases of the disease with concomitant

brain white matter lesions have been described. We report an Italian

family with CMT1A disease, consisting of the proband and 4 affected

members, presenting with concomitant brain white matter lesions at

magnetic resonance imaging. The association is particularly

fascinating and might depend on an autoimmune mechanism, not yet

clarified.

So far, , this is the only other research abstract I have read

about CMT and white matter lesions, besides those I have mentioned

in previous posts. I wish I could help you more, but I'm not a doc.

Just keep asking your docs questions, take notes, meditate on the

notes, ask more questions. It is entirely possible your sister with

MS may have been misdiagnosed - misdiagnoses are common. MS was one

of the " re-diagnoses " I had given to me in my teens, which after the

horrid spinal tap and some other tests proved to be a false

diagnosis.

Good luck. Let us know how your rheumatologist appointment goes.

~ Gretchen

[Guest guest]

Hi,

I have a type 2 CMT and was found to have white matter lesions at brain MRI

about 3 years ago. My neurologist at Strong in Rochester hasn't been too

excited about them, however, I am concerned. Incidentally, I come from Italian

parents.

P.

[Guest guest]

> MS was one

> of the " re-diagnoses " I had given to me in my teens, which after the

> horrid spinal tap and some other tests proved to be a false

> diagnosis.

> ~ Gretchen

lol, I can relate about the spinal taps (a.k.a. lumbar punctures), but

also know they can be useful. This idea about cocominant autoimmune

conditions is an emerging thing.

[Guest guest]

Hi Rita,

For the white matter on the brain, at one time a man called Roman living in

Paris posted regularly. Roman indicated he had I a rare type with white matter

syndrome. Maybe he can post again and help you with more information, or you

can look for his posts.

I hope you are well,

Donna in London

[Guest guest]

Spencer and I had MRIs done. We don't have any white matter lesions. I still

think we have type 1 A.

[Guest guest]

Hi ,

Yes, people with CMT can have white matter on the brain.

My 10 year old boy was found to have white matter on his brain.

I was told that this is a very rare form of CMT because it attacked the central

nervous system in addition to the other more common CMT symtoms that are more

likely in the hands and feet.

Our doctor found the two following papers/studies:

There is an article on www.neurology.org <http://www.neurology.org> at Univ

California San Diego, entitled, CNS phenotype of X-Linked

Charcot-Marie-Tooth Disease. More than a peripheral problem by

, M.D., Simon, MD., Harold Marks, MD, and Scherer,

MD, PhD. This review, tells of a 12 year old boy, lists the symptoms

and you can view the brain MRI(s).

Hopkins University, OMIM #302800: CMTX

CHARCOT-MARIE TOOTH PERONEAL MUSCULAR ATROPHY, X LINKED. On Page 2 of 9, it

talks about the Central Nervous System Involvement and lists 3case studies with

cerebral abnormalities on the MRI.

I hope that this is of some help to you. Please share with me anything you find.

We are new to all this and I feel as though my boy is a walking time bomb & do

not know when the next episode will happen again. In our case, we hope to know

more in December when he has a repeat Brain MRI.

Take Care,

Rita

[Guest guest]

I had an MRI 7 years ago and it stated that I also had a spot of

white matter and it was probably MS. I went to a neurologist

and they both said I did not have MS and that it could be from

Lyme, but I also had candidias all over and they said it was

more likely from that. Since the candidias is under control I

do not have any of the Lyme symptons and have been very healthy

for the past year and a 1/2, I would like to get another MRI,

but our insurance won't pay for one and I feel better than ever.

Blessings for your continued healing process.

DonnaLee

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