Learning about CMT

[UTTERJOY4]

Hi,

To anyone who wants to learn about CMT after being diagnosed and also the family of the person diagnosed, I found this website which was very inciteful and informative from a personal perspective:- charcotmarietooth.webs.com/...

[curlyburli]

Thanks,. This is our Sam

[lowther1]

I have just read this, and can identify with just about every aspect.As a cmt suffer that didn't affect me till later in life, i have been lucky enough to have my family, and although i have 2 children with this they have my attitude to life, work, love, enjoy. I now have other problems also associated with cmt but i still work at 59, i laugh a lot especially at myself, my work colleagues couldn't be more supportive. I have 1 son who shows no sign of cmt and has given me 2 lovely granddaughters. i have now developed extremely high blood pressure, breathing problems through a paralized diaphragm,but life goes on, the extreme tiredness as Sam describes can be overwhelming but a catnap often is all you need. Good luck Sam, and thanks for giving us an insight in life.

[marcim]

Hi Everyone!

This is the first time I've written anything on here. Since I joined HealthUnlocked, my mind has been put at rest, as I have discovered there are so many other people who have gone through the same things as me. I could be reading my own life story everytime!

Thiis has been on my mind for ages.

I live in Plymouth, Devon. While in respite last year, I met the first person I'd ever known with CMT in my area. When we got talking, she said she was initially diagnosed with MS, and then her CMT was discovered. She has two children, only her daughter (who is a few years younger than me), has CMT.

Near the end of last year, she (the daughter), said she had like a mist come down over her right eye and it has affected her sight badly. She had varies tests including MRI scan. She was then told that she also has MS. She was told that apparently, this is one of the signs of MS, and it could take a while to clear.

Has anyone come across this situation, where CMT and MS are diagnosed together, twice, in one family? I mentioned it to my Neurologist when I saw her recently, and she said she hasn't come across it before. Really curious to know if anyone has?

Marci

[UTTERJOY4 in reply to marcim]

I've not heard of this myself. However i'm the youngerst of 4 and I had a sister who was only 4 yrs older than me and for yrs we fought to find out what was wrong with her. It took until she was bedridden with 5 children before being diagnosed as having MS. For her it was too late as she had progressed fast with it and unfortunately passed away at the age of 34 because of MS. I will always wonder now if she maybe had CMT also as after yrs myself of trying to find out what was wrong with me, suffering very similar symptons, I found a fantastic GP who was happy to refer me to be tested for MS but in the meantime was found to have CMT. A close family member has MS quite bad and even she thought i had it at first because my syptoms replicated hers when her MS first came on.

I only found this site and joined yesterday but knowing other people understand just how you feel and empathise rather than sympathise helps alot. I was beginning to think it was in my head and I must have been becoming a hypochondriac to my family.

[CMTUnitedKindom Partner]

We do have several members with CMT and MS and I think it's mostly just a case of very, vey bad luck. They aren't connected or associated with each other, despite both being myelin problems - ones in the brain, one in the peripheral nerves.

Glad you've found Sam's website useful - dont forget ours too - cmt.org.uk

Karen

[spabbygirl]

Thanks for that link to the excellent website, it's really useful & I followed the link to the lupus/tiredness work and that was really good as a way of explaining what CMT is like. I had the eye thing a few years ago & have just started having it again. About 4 years ago I had the mist on one eye & went to the optician. He said it was optic neuritis & sent me straight to the hospital, who kept me in overnight & gave me some steroids. Apparently even just the swelling of the optic nerve can damage vision whatever the reason for the swelling so they usually use a drip of steroid to take the swelling down.

For the first time they decided to use tablets so I was kept in overnight & sent home next day with tablets. It did take about 6 weeks to go down & the steroids lasted about ten days or so. I was sent to see my neurologist to see what could have caused it. He asked if I wanted to know or not (cos some people don't want to know apparently) & did all sorts of test including MRI scan & I knew about the possibility of MS. After all the tests there was nothing conclusive, no MS, & my Consultant said they don't know what caused it, apparently that's quite often the case. So after lots of aftercare appointments I was discharged.

I did have a few other small episodes but nothing was picked up on their equipment. Then all was well for 4 years but now the same thing is happening again. I haven't been to the drs this time, it strikes me they can't do much anyway, but I should. I will go next week.

I thought I saw somewhere, maybe CMT US, that there is a link with eyes but my Consultant insists there is no link. I'm 56 and have CMT 1A

[CMTUnitedKindom Partner]

It's extremely rare for CMT 1a to cause optic issues - and of course, eye problems are very common in the general population, so it's probably a case of bad luck - like that poor family with MS and CMT.

Type 2a can be associated with optic atrophy - but only in that specific type.

Karen