Re: CMT 1A: Genetically determined neuropathy accompanied by immune dysfunction

[Guest guest]

I'm not surprised to read this.

[Guest guest]

immune dysfunction? so as in get sick more?

[Guest guest]

,

As stated this research noted that there only * a few * that have an immune

component. And this is only for CMT 1A.

Do not worry yourself into bad health. We all need to take care of ourselves,

head to toe, literally. And daily. Eat right, exercise to the level we can, get

some rest, have some fun, nourish psyche and soul, let go of 'excess baggage'

and focus on 'wellness'.

Gretchen

[Guest guest]

I was just wondering because I have CMT1A and I am literally sick with every

cold/flu that goes around. I bet I am sick 50% of the time. I take supplements

to try to help, but it dosen't seem to be helping. Friends have commented on how

often I am sick and have asked if CMT is autoimmune.

[Guest guest]

,

CMT is * not * an auto-immune disorder. It is entirely possible to have a

co-existing syndrome along with CMT. For a list of autoimmune diseases, see

http://www.aarda.org/research_display.php?ID=47 on this list it * does * have

demylenating, axonal and neuronal neuropathies listed, however there is little

research on CMT and auto immunity.

If you're always feeling " sick " I would suggest you talk with your Internist and

Neurologist about this.

Gretchen

[Guest guest]

:

No, CMT is a peripheral nerve disease. Check it out online. Do you smoke or

are regurly around people who smoke or around people in general who are sick?

Those can be a reason why you get sick easily.

Marin

[Guest guest]

Gretchen.

First of all I just want to express how interesting I find you´re answers and I

have often wondered if you have a medical background of some kind. This is

because you really seam to be very well oriented in matters on subjects here.

Thanks for your answers anyhow.

I just would like to share this about the automimmune issue. My daughter has a

CMT- mutation of 1B that is not earlier seen, which means - quoating her

neurologist - that they just don´t know what to expect! She has been very sick

and had a number of symptoms not at all ranging within the classical CMT group.

In fact they are now wondering if she her CMT also includes disturbances in the

autoimmune system too. Actually she is currently undergoing examinations -

bloodtests, so on - and we are basically waiting for the results of these. If

you like, I will bring back the results of these, if it it has your interest?

greetings from Denmark,

Anne

[Guest guest]

Hi Anne in Denmark,

No, I don't have a medical background at all. (background is in the Arts,Public

Relations, and Fundraising!) But, for about the last 12 years or so I have been

seriously studying CMT (on my own), learning from reading medical journals, from

conversations with CMT doctors, from newsletters, websites, and also from what

people here at share with me. Added to all of that, is living with a CMT

diagnosis since I was about 10, with symptoms at age 7. I suppose the years and

study have given me some common sense, with a bit of intuition thrown in. In

meeting so many people with CMT, I feel more like an Anthropologist of the

syndrome. This is a link to a story on me from 2007 if you would like to read

http://www.santaynezvalleyjournal.com/archive/5/25/568/

No one knew " what to expect " then, and no one knows " what to expect " now. CMT is

a disorder of " certain uncertainty " .

You didn't mention your daughter's age, but I am wondering if she has had her

tonsils removed? Before age 17, I had problems with reoccurring colds,

allergies, bad flu, and skin infections. Shortly after turning 17, I had my

tonsils removed and all that stopped and has never returned. During my college

years, about every 6 months or so I was injected with a dose of gamma goblin. It

wasn't for CMT, I don't think, but to project me from mononucleus, which was

rampant at the time (early 1970s)

I hope you get some answers from your daughter's tests. Yes, please let us know.

Gretchen in Southern California

[Guest guest]

Gretchen,

Thanks ever so much for your response and yes, I can well understand how you

were able to learn from all different kinds of studies.

-And still do! Thanks also for the article about yourself. I have just opened it

to find that you SHINE !!!  Lovely picture of you actually thriving from life.

I will read this article later. My daughter is actually 37...though maybe one

would exspect her to be younger the way I go on about her.) I hope she reads

this! )  She sometimes reminds me that she actually is grown up...and she has

certainly handled her dealings with her CMT in such a competent way. -when she

has the strength too.  She has actually been ill for the last 4 years -

KNOWINGLY - after her birth of her twins.

As we look back we of course have found many signs of CMT far earlier. - But as

I just said in my last notice, now she within the last weeks has risen from the

ashes almost...and I just hope something has changed to give her a less dramatic

process with her sickness.  I am in a sense, still a traumatized mum..who has

watched her daughter go from " normal " to very sick, very quickly. Something I

know I share with a lot of you in here. That is probably why it´s healing to me,

to be a part of this forum.

Gretchen, I will save your mail, if she has not had time to read it (she often

reads these dialogues) I will also ask her to brief you about the result of her

doctors investigations of a " maybe CMT in the autoimmune parts of system " Cannot

say though what the time perspectives may turn out to be, concerning the answer.

warm greetings from Denmark.

Anne

________________________________

From: " gfijig@... " <gfijig@...>

Sent: Friday, March 13, 2009 6:02:27 PM

Subject: Re: CMT 1A: Genetically determined neuropathy accompanied by

immune dysfunction

Hi Anne in Denmark,

No, I don't have a medical background at all. (background is in the Arts,Public

Relations, and Fundraising! ) But, for about the last 12 years or so I have been

seriously studying CMT (on my own), learning from reading medical journals, from

conversations with CMT doctors, from newsletters, websites, and also from what

people here at share with me. Added to all of that, is living with a CMT

diagnosis since I was about 10, with symptoms at age 7. I suppose the years and

study have given me some common sense, with a bit of intuition thrown in. In

meeting so many people with CMT, I feel more like an Anthropologist of the

syndrome. This is a link to a story on me from 2007 if you would like to read

http://www.santayne zvalleyjournal. com/archive/ 5/25/568/

No one knew " what to expect " then, and no one knows " what to expect " now. CMT is

a disorder of " certain uncertainty " .

You didn't mention your daughter's age, but I am wondering if she has had her

tonsils removed? Before age 17, I had problems with reoccurring colds,

allergies, bad flu, and skin infections. Shortly after turning 17, I had my

tonsils removed and all that stopped and has never returned. During my college

years, about every 6 months or so I was injected with a dose of gamma goblin. It

wasn't for CMT, I don't think, but to project me from mononucleus, which was

rampant at the time (early 1970s)

I hope you get some answers from your daughter's tests. Yes, please let us know.

Gretchen in Southern California

[Guest guest]

Marin,

No not at all. Of course there are always people who are sick around me. I go to

church several times a week so I know that I can easily pick up things there, or

the grocery store, or where ever. My daughter is in Pre-K so I'm sure she brings

home loads of germs. This has been a problem for me my whole life. If I come in

contact with anyone who is sick I can count on coming down with it within a week

usually. I also seem to get it much worse. Some time hubby and I will both have

a cold and it will hardly bother him, and yet I am so sick I can barely get off

the couch.

I have lost several jobs for missing too much work, and I nearly didn't graduate

high school because of the amount of absences I had. I graduated with a 3.5 but

they could have failed me anyways because of the abcenses, thankfully they did

not. I am very fatigued due to the CMT and sometimes I think this may compromise

my immune system.

>

> :

>

> No, CMT is a peripheral nerve disease. Check it out online. Do you smoke or

are regurly around people who smoke or around people in general who are sick?

Those can be a reason why you get sick easily.

>

> Marin

>