CMT type 2N

[Wurzelone]

Hello,

I'm a 45yr old English woman living in Sweden. I found out last spring that I had CMT. It was a chock and reading up on the illness made it even more difficult to deal with. I live here with my 13 yr old son. I have no other family here and the friends I have 'don't do sicknesses,' .........their words.

Just before Christmas I found out I have type 2N apparently only a handful of people have........ making me feel even more isolated than before.

I was told that CMT is a very slow progressive disease and that I should continue my life as normal. I already had severe pain in my feet and legs, fall a lot, ( I have calipers now which help), and my hearing was going. My recent checks 3 weeks ago show my illness has more than doubled in the last 8 months. I now have braces on my hands, my speech is sometimes slurry and the nerves on the left side of my throat are not working properly. All they can say here is 'oh.' I was forced to go down 25% in work hours as I'm not able to cope. To claim 25% sick I have been questioned and questioned over to the validity of my illness. To say things are tough is an understatement.

I would like to know if there is anyone else out there with type 2N. Also, how do people cope with this CMT, an illness that seems not to be so widely recognized?

[keefer12]

Hi, sounds like things are getting pretty bad for you at the moment and no support available. I thought the Swedish where liberal and progressive! I don't have CMT 2N but do have CMT type 2. However, it sounds like you are having far worse symptoms that I experience so it sounds a completely different type. Have you contacted CMT uk (see below)? How are the doctors in Sweden? I have very good support from Neurology department in Queen's square London so am very fortunate. I really feel for you, you must feel so isolated. You can contact CMT UK if you need to they're very good and you can chat for awhile.

I agree CMT does not have a high profile like other neurological conditions, perhaps because the others i.e. Parkinson's and cerebral palsy effect the central nervous system and the effects tend to be more visible and disturbing, I don't really know though.

Best wishes

Doug

CMT United Kingdom

98 Broadway

Southbourne

Bournemouth BH6 4EH

UK

Freephone: 0800 6526316

Tel: 01202 432048

Text: 07451 217542

Email: [e-mail]

[rosesworkshop]

Hi, I have CMT type 2, mine has progressed too, i have lost my phrenic nerve, which mean i am on night ventilation, my speech are going too, I all ready have splints for hands, feet, too. the site CMTa on face book is very supportive I have found!

if you want a friend add me on FB. or email.

Rose light.

[John1945 in reply to rosesworkshop]

Hello to rosesworkshop !

Over the last few years many sufferers of Cmt, have been reporting difficulties in their their breathing pattern :

However, today many NHS neurologist's are reluctant to diagnose this particular symptom because, up until now our medical professionals always associated Cmt, and its many sub-types was entirely due to the patients own 'peripheral' nervous system being defective:

In Cmt, the sufferer's own peripheral nerves (nerves sited just below you skin's surface) are damaged due to defective 'MYELIN", which is a "wax-like" substance which wraps around your own 'Peripheral' nervous system: It is intended to, insulate and contain + transmit the strong electrical "wave-signals, which are continually going "to-and-from" your brain to specific muscle group:

Your 'peripheral-nerves', insulation covering/sheathing is damaged, and leaks:

Therfore your brains much reduced signal velocity, speed and strength is greatly reduced, and over a long period of time, due to this lack of a "strong" electrical signal being received at a particular muscle group, will cause that muscle group to "waste-away":

Your 'phrenic-nerve' is contained within your body's "central nervous system", which is protected, and contained within your brain, and spinal column:

Interestingly, the "phrenic nerve" controls your diaphram, which is actually a parachute shaped "MUSCLE" ?

The diaphragm is the main muscle used in the process of inspiration or, breathing in. It is a dome-shaped sheet of muscle that is inserted into the lower ribs. Lying at the base of the thorax, it separates the abdominal cavity from the thoracic cavity.

So ?

Is there a possibilty that all Cmt's sufferers, with existing defective peripheral nerves, may also have problems within their 'Central Nervous System ? ? ?

Answer's please from our NHS professionals ?

[rosesworkshop]

I am so sorry that it has taken me so long to pick your reply up. I wondered how you are now? I promise to reply ! I have splints and been thought similar stuff. !