Frogert

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  • #143696
    Reply To: Hello from new poster with Myofibrillar Myopathy

    What’s FB site called

    Frogert
    Participant
    Posts: 2
    Joined: 30/04/2015
    #143695
    Reply To: Hello from new poster with Myofibrillar Myopathy

    HI all
    I have MFM (and getting use to all the abbreviation and jargon ) with the defect in the myotillin gene which was diagnosed after tissue biopsy in 2015.
    History is that my uncle was diagnosed with IBM(wrongly) which lead us down the line of M.D. and eventually MFM. My farther who had lots of mobility problems but never diagnosed, I feel he must have had MFM which if he suffered from mid 50’s .I have had symptoms from mid 30’s but has been worsening dramatically in the last few years,while I still walk with only a stick many tasks are beyond me . They lasts 9 months have shown a dramtical diteriation (including spelling) I have read that it can worsen with generations ,which is concerning as a have a very young son . I am pleased to have found this thread as it seem so little or limited info on MFM so isolation is an issue . What if FB link
    Hope to chat more

    Frogert
    Participant
    Posts: 2
    Joined: 30/04/2015
    #143687
    Reply To: Peptiplus /flexart MYO? Any use!

    Hi I have a myofibrillar myopathy with defect in myotillin gene.

    The Pregablin has settled down ,I never been to worried about my weight am slightly over what I would like but nothing to much .

    I swear by the co q10 but I take statins for hypertension , which I discovered cause leg pains similar to M.D. but fact a side effect of stains and co q10 counters it . As for the creatine I’m just not sure as I have good days and bad days its hard to gauge.which is my question about Peptiplus and in fact any supplement? …?

    In fact I’m totally confused about all meds as I strated the pregabilin as I seemed to be on a bit a of a decline generally so don’t know if it has help slow it down or made no differenceat all?

    The search for the solution continues??

    Frogert
    Participant
    Posts: 2
    Joined: 30/04/2015
    #96537
    Re: thoughts on therapy.

    thanks for your feed back, its good to get some perspective on things ,and that I have to see this as part of the journey ,however up and down it is going to get?

    Val – thanks for the EFT suggestion ,I’m always looking for alternative ways to help ,it looks very interesting ,do you just practice by yourself or have you had session with a trained facilitator, if so, can you recommend any one?
    as for the Creatine , I think it helps, not sure how much it help with the pain but I feel it gives me a little more strength and stamina, I take it everyday in the morning and try and take it after I have done anything strenuous (when I remember to or am at home to take it) I started off with capsules but have moved on to powder as it is a lot cheaper and just as simple , I don’t know how much is a placebo effect , and it is so hard to gauge the effect as there always seems to be so many other :weather ,mood , stress , etc

    was also wondering about diet , is there anything that people know that make things worse ?

    I am glad that I have taken the plunge…. this is the first forum for me so still new to the game , but it has also made me realise that this is not going away , and I will need places like this from now on ! maybe one day I will be able to help someone else on there Journey?

    Frogert
    Participant
    Posts: 2
    Joined: 30/04/2015
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