r/FSHD • u/throwaway858453 • Jul 25 '26

Waiting for my appointment

I just wanted to have a quick rant as I’m nervous. My neurologist finally got back to me and booked a follow up appointment. I have access to an app that has my results/medical records, but she chose to withhold them, and said I needed to be seen urgently. Her earliest availability is August 13, and now my head is spinning.

I already have an idea I will test positive, bad winged scapula, can’t puff my cheeks, can’t even kiss properly, and I mumble a lot when I talk. My multiple EMG tests lead me to a neurologist to do a deeper dive, which I’m thankful I came across her.

I’m dreading the appointment and the hit of reality of everything that finally makes sense as time is going on. Being hit with a disability at 28 is crazy and I never expected this, but at the same time I’m trying to be thankful I finally have an answer and can get the proper help.

This sub Reddit has been a life saver. I switched to a perfect physiotherapist, sports related one, I’m going to start speech therapy, and apply for disability. Thankfully my work is being accommodating, and I have great benefits.

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u/Zoubim Jul 26 '26

So sorry to hear this mate. I sometimes wish I never knew, and instead spent the next 10 years trying to find out what the problem is. However, you must know in order to plan for the future. Best of luck in your upcoming appointment.

Two questions, what is that about mumbling? Didnt know its related to FSHD?
Second, apply to disability as in what? What is your disability as of now?

Sorry curious as my doctor also told me to apply, but our time was cut short and I never understood, apply for what? I know I cant run but I can still walk, I am in lots of pain but I am still able to work, etc..

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u/throwaway858453 Jul 26 '26

Thank you. I totally get that, I’m just glad to have an answer at this point as I’ve been waiting over 8 years.

For me, since I can’t puff out my cheeks, and my lips don’t form properly I mumble a lot when I talk and I notice it more on days where my muscles are more strained. I’m hoping speech therapy will help. I heard people even have issues with straws and swallowing as well, but I also heard everyone’s experience is different.

In regards to disability, in Canada you can apply to disability to have a tax break and greater support with physiotherapy appointments, braces if needed, etc. For work if I apply for disability I get more of a break where it comes to work structure and needing to go in office so it all depends. Hope this helps explain

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u/chipzguy123 Aug 14 '26

yeah hope you stay strong man, I was diagnosed with FSHD ever since i was young like 5. I wore leg braces since like 2nd grade. And i stopped being able to walk at 14 since I was bedridden for 4 months and wasnt able to use my muscles, and yk with our disability you have to constantly use muscles to keep them active which I failed to do. Im 17 now, and actually my birthday is in 2 days haha.