Sorry for so long a silence...not doing too great. Anyway...
I received my response from Xenon that I have a gene mutation (P610T). They indicated that it was not the mutation they were looking for but in the same coding region. My small research indicates that it may indeed be connected with EM.
Any information any of you may have regarding this would be greatly appreciated.
How are you? I recently uploaded a new article on P610T. Have attached again. P610T in SCN9A is found in Primary EM (genetic not sporadic). Mexiletine found to be effective in various studies.
Hi Dazsa. I am sorry you have been doing so poorly.
I haven't gotten my test results yet but just got notified they are available and are on their way to my doctor now. They were delayed quite a while for some of us. I don't know anything about this but I read what Mads posted and it makes sense. Maybe you should speak to your doctor about trying Mexiletine.
Hi , I too have had my results back and they are reading the same as Dazsa’s. I am I tested in you recent post about the gene p6102 mads but I can’t seem to find the link to it? Thanks Kate x