Facioscapulohumeral Dystrophy (FSHD)

Ash · Dec 18, 2024

Daisybell said: ↑

It does seem that drug trials are beginning for various forms of muscular dystrophy.

A ‘lack of progress’ update on my situation…
At this point, i have been told I am not being considered for the FSHD drug trial in this country. Apparently I am not sufficiently affected.
I haven’t actually seen the neurologist since my initial appointment where he confirmed that I do have FSHD and have some symptoms. That was over 2 years ago. I went to see my GP the other day and she has referred me back to Neurology. I am presuming that the one year follow up that was planned after my initial appointment has just been scrubbed. I don’t know whether the system just removes people from the waitlist if the appointments are so delayed… it certainly seems like things are not working well in the health system at the moment. But I am not prepared to just put up with being told that I am too mild for the trial if in fact the specialist has only seen me once 26 months ago.
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Sorry to hear this @Daisybell. Wishing you best of luck fighting the exclusion and denial. X

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Facioscapulohumeral Dystrophy (FSHD)

Ash Senior Member (Voting Rights)

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Facioscapulohumeral Dystrophy (FSHD)

Ash Senior Member (Voting Rights)

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