Peter Jones from the Jones Lab does podcasts on Spotify. He’s quite a talker - but you can fast forward over the intro all about sport! He’s very...
Hi anyone who reads my thread! I had a video meeting with some other people in NZ with FSHD - either in the family or confirmed with genetic...
I have voted in this poll - but can remove my vote… I took LDN for many years - as I found it took the edge off my pain. I no longer take it -...
Another update. I went for a blood test last week - neurologist requested Creatine kinase and vit D. My CK is significantly raised - no great...
It’s interesting that the gabapentin is definitely helpful. I forgot it the other night and then was very sore and stiff. Two tablets = more...
And I took some gabapentin last night - no horrible side-effects and I felt generally more comfortable and less achy and sore. Yay!
Well the appointment went better than I was hoping! The neurologist found signs of FSHD - weakness in my neck, and one shoulder, and eye lid. He...
I’m hoping for a confirmation that my symptoms are due to FSHD. That will mean I get a diagnosis that is seen as causing disability, rather than...
I have just had a Neurology appointment offered for Monday morning… Presumably my haplotype test results have come back. At least this...
Of course if the Neurologist googles FSHD, this site may pop up….
Today I went to give more blood for haplotype testing, requested by the Genetic service. It seems that Neurology will make a decision about...
So - the original Neurologist said if the genetic test was negative, there was no need for EMG, given normal limb strength. Today, via the...
Got a phone call today from the genetic service - my results are finally back. FSHD type 1 is confirmed. The genetic counsellor said she wasn’t...
My GP ran a whole load of blood tests to check my levels of things- iron, potassium, magnesium, thyroid hormones etc etc She was very thorough....
Wikipedia does actually have quite a good page on FSHD if anyone is interested. It’s interesting to read about the use of exercise and CBT for...
Do my symptoms fit with FSHD? At this point - without a recognised diagnosis from the health system - the Neurologist says No. No weakness of the...
This post is a history of how I got to be diagnosed with ME - which is probably coloured by my bias and search for meaning. I was healthy and fit...
I’m posting this new thread as I have been going through the process of diagnosis. My father was diagnosed last year (he’s now in his 80s) as a...
I can see potential problems with having a register - who decides who is appropriate? Can anyone put themselves forward? What is to stop the...
I think that it is worth considering that an alternative diagnosis might come along at any time. One that may co-exist with or supplant the ME...
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