Cmt2

[Kerri05]

I have just been diagnosed with charcot Maria tooth 2 CMT 2 which is a genetic condition I have always thought I had pernicious anemia not sure what the future is with this glad I now know what it is. Not sure what the treatment is.

[helvella]

Here are some links which might be of some interest and use. The first is to a UK charity dedicated to the disorder:

cmt.org.uk/

ninds.nih.gov/Disorders/Pat...

nhs.uk/conditions/Charcot-M...

[deniseinmilden]

Hopefully this was found with genetic testing and not just an idea because you weren't getting enough B12 on only 3 monthly jabs.

As you have a PA diagnosis there is a chance that this is part of the problem alongside the MCT 2, and in any case more frequent B12 injections and supporting supplements might help you anyway.

[Gambit62 Administrator]

there is actually a forum on HU sponsored by charcot-marie-tooth UK

healthunlocked.com/cmtuk

[helvella in reply to Gambit62]

Didn't realise they are on here! Thank you.

[Hidden]

My neighbour’s granddaughter has Charcot Marie Tooth and one of her children has also been diagnosed recently.

Make sure you have seen proof that this is what you have, not just a doctor’s hunch.

If you’re certain then I think it’s a case of knowledge is power and plenty of support from people who live with it.

One recent problem the granddaughter had was she tripped and broke a bone in her foot. The local hospital just kept saying they didn’t know what they should do as they didn’t know how CMT would affect the healing. I think you need to be very assertive and insist on the correct help when you need it. On the positive side, her foot healed ok though took longer than normal, and she’s back driving, walking etc...

[Lurcher-lady]

My friend has CMT and so does her son. She does a lot of fund raising for the cause and would be happy to talk to you. If you’d like to talk to her, just message me for her details. It’s a lot to take in and sometimes someone on the same wavelength can help.

[Lurcher-lady]

My friend said the same as others on here, to be sure that’s an actual diagnosis first and then to contact the Cmt UK office and get some information. Www.cmt.org.uk 01202 474203