CMD

[djl45]

Hello all

I suspect I may have CMT? I'm waiting for a neurology test, its taken from March to get this far but the test is still late January.

I have felt from May last year my muscles are wasting away? I built a log cabin garage in 2016 on my own but now find it difficult to lift things much lighter. Yes I have had high arches since birth. I get cramps at any possible moment, fluid retention in my right ankle. Getting up in the morning feels like I've just done a marathon, it gets better as the day goes on. I still walk my dogs twice a day but hips are starting to feel pain.

It was only through a recent test that the doctor said I shouldn't have come to see her and that I should see a neurologist?

I am not aware of family history and both parents have passed on leaving my sister (same age) so do not know how to fine Gene history?

Any information or leads welcome?

Thanks

[Morllyn]

djl45 , if there is no family to ask then genetic testing may be useful. Hopefully the neurologist will do some testing and that will give you the answers that you seek.

My husband and son have CMT type 1A, we suspect. My husband got it from his mothers side of the family, they each had small signs, usually in the feet. My husband, one of his brothers (in later years) and a cousin have had the worst problems.

[spabbygirl]

I didn't have CMT in my family, I was a 'new mutation' where genes join together and cause a fault at conception. It is hereditary in my children now. I'm always tired and my ankles swell because of lack of proper function. My hands though are decidedly skinny, from muscle wastage. Hope you get answers soon.

[djl45 in reply to spabbygirl]

How do you know its in your children? Has this been proven? This is what worries me more than anything.My children.Ive never known about this thin before ,and i'm not even sure the doctors know about it either?

Sorry to say that NHS doesn't seem supportive or knowledgable about this thing.

I'm not looking forward to the next few years?

Best regards to all

[spabbygirl in reply to djl45]

the dr's do blood tests. Once they've identified the faulty gene in the sufferer they can look for it in other family members. Apparently its difficult to find, but once they've identified the gene in 1 family member its easier to find in others. They do that after the neurologist has confirmed it is CMT. Then you get referred to a genetic dept & they do the family.

[spabbygirl]

I was really worried about having given it to my son, hurting him was the last thing I'd want to do, so I told him. He said he'd rather be born with CMT than not be born at all, and that made me feel ok.

[beachwine in reply to spabbygirl]

What a sweet son you have.

[John1945]

Hello to djl45...... CMT is an "Inherited" Neurological Muscle wasting disease, which is passed from a parent to their "offspring: Cmt is not fatal, or infectious, and you can expect a normal lifespan (albeit with severe muscle wasting problems? You cannot "catch-it"