2nd Blood tests

[handmaid]

I had a 2nd lot of bloods taken at my GP's last week at my neurologist request. The first showed that I don't have the common form CMT. It's going to be a long wait for the results me thinks!

[beachwine]

Hi Handmaid, I understand about not being "normal", just ask my husband - lol. My CMT type has been only been found in one family line in North America & one in Bulgaria. How strange... I'm in the America. My sister who tested negative for CMT said "why can't you just have a common cold?". I don't think they will be researching a cure for such a small group of us. And sadly it does progressively get worse. I add my CMT with rheumatoid arthritis and joy, what crippling pain. I guess like everyone else I have days that are worse than others. Hang in and keep smiling, it makes people wonder what you've been up to!

Pam

[handmaid in reply to beachwine]

Hi beachwine, Thanks for your reply. Being "normal" isn't all it's cracked up to be, I've always liked to be different. When I get my 2nd blood results I'll post the strain (hopefully?) You put a happy spin on your situation, a friend of mine has rheumatoid arthritis she's had many surgeries & suffers a lot of pain. I am in England. Shani

[MommaWheels in reply to handmaid]

Hi. Im in the US. I had blood tests with the full genome as did my parents. The genetic counselor can’t find my CMT. So frustrating. They said that my genes possibility created some new mutation. They put my results in some data base and said they would let me know if someone else shows up. I now joke with my family that my superhero name is Mysterious Mutant and I’m thinking of writing a comic book. You have to laugh about how much they still don’t know with genetics. I hope you have better luck. Best wishes.

[handmaid in reply to MommaWheels]

Thanks MommaWheels,

I will update my results when they are in.

Best regards

[beachwine in reply to MommaWheels]

Momma, I know what it's like to be "abnormal". My genetic Gene showed in 1 family line in North America and 1 family line in Bulgaria. I'm in North America, so now there are 3 known to exist. Don't guess they'll be rushing to find a cure for the 3 of us. So I'll just keep on doing the best I can.

[Blubabycakes in reply to beachwine]

Do you know which gene you have

[handmaid in reply to Blubabycakes]

Evening Blubabycakes,

No i don't yet know which gene i have.

My neurologist thought I had the "common form" CMT but don't.

He had a 2nd lot of bloods taken, hopefully that will give me an answer.

I'll update when able