Charcot-Marie-Tooth UK

CMT 1A & MDS ( Myleodyplastic Disease Syndrom)

Just to add to everyday fun I have just been diagnosed with MDS a pre-leukemic condition.

The Consultant mentioned I was the third person this year with CMT he had seen and he wondered if there was in some way a genetic link, I promised to ask on the forum.

Has anyone else had this double diagnosis?



3 Replies

So sorry about your news, Phil. I do hope they have intercepted it in time...

I have never come across MDS, but have had 2 different cancers over the years (both thoroughly dealt with and banished, thank goodness), so I may have some inkling of how you feel. In my case it was just two helpings of bad luck.

I wish you all the very best, and hope you have good people around you to support you.


Hi Philip,

I am so sorry to hear your news.

l myself haven't had the double diagnosis.

I wish you all the very best with your treatment & hope you get all the help & support you need to get through this.

Remember we're all here to give support when needed. Take care.


Hello to PhilC >>>>>

As if living with Cmt Disease is not hard enough, you now have to cope with this additional medical condition :

The answer to your question is YES !

I am currently attending a Consultant Dematologist, to see if he can eliminate my current facial "white-spots" which are sited just below my face's skin, by using the latest NHS 'laser' technique :

After two consultations with him, he then referred me to see a Consultant Geneticist who is a specialist, or expert in genetics:

This consultant did confirm that Cmt has a genetic 'link' with your lungs, and is diagnosed by "blood-tests" :

I will update 'Health Unlocked' when my results are received in 10/12 weeks time: My blood's are being sent to a Specialist Univesity Laboratory for analysing

Best of luck ......

John (Glasgow) .....


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