I had a call today from a very special Doctor, he is the Head of Human Genetics in my area and I saw him on the 6th of Feb, at which appointment was meant to be a Neurologist, but he/she did not turn up then. This Dr. is superb, he called me to say he had written to a lady Neurologist who has a special interest in CMT and other unusual conditions and sent all my notes on to her. I should hear soon from her he said. He has also sent my blood samples from way back in 2002 for more research into my myopathy. Although, the Consultant in Adult Metabolism said she did not think I had had the right "label" he is says it is certain that I do have a muscle metabolism disease and he is intent on finding out which one. I am so relieved he is on board as I trust this man completely, he is such a genuine person and will find the answer no matter how long it takes. I now have appointments at the Pain Clinic and Dermatology this month, so things are moving on albeit slowly. I have also been in touch with the CBD Company that was recommended and have taken the plunge on this to. Will keep you all posted on things as I go. Thanks to all of you who have supported me in my journey. X
PROGRESS!: I had a call today from a... - Charcot-Marie-Too...
PROGRESS!
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LoolooLacey2
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Yay!! Brilliant news!!! Its such a relief to get things sorted x
Hooray!
I am so glad you will be getting some help at last, and that there is someone determined to discover what is causing your problems. And then I hope you will get proper help managing the symptoms even if there isn't a cure. I hope you don't have to wait too long to see the neurologist.
Looking forward to hearing how you get on.
All the best -
A.
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