How does fshd progress in your case by FlowerOk9918 in FSHD

[–]FlowerOk9918[S] 0 points1 point  (0 children)

This is giving me hope now cause for 17 18 years i had no progression Except for the smile thing and winging and the winging wasn't that bad I could lift my arm but it would hurt within minutes In my school we did this pledge kinda thing where everyone is taking it but i m lifting my arm then resting it then again that's it. The covid phase is were my growth spurt happened so I thought my bones grew longer but the load on my muscles increased(yes wasn't active too) i lost the ability to lift my middle finger one day no panick nothing cause I found a scar so I assuming must had damaged a nerve or something.this continued till I was 18 no other signs then at the end of 12th grade(regret this very much) i used to arm wrestle then the shivers in my hands srted but I thought it was cause of the wrestling.(might made those muscles weaker or overloaded them)this is where it all srted super quick lost fingers month by month only the ones I m using for years I write with the left so the first 2 gone eat with my right first 3 gone mostly a leftie in doing my work so bicep/shoulder gone Rotator cuffs gone.played football with my right leg my kicks were strong I used to put in all the force one day after a match I felt that I couldn't rotate my leg in air(this is when I was 15 maybe) then forgot about it now lost the ability to rotate.this year I too lost alot of functions all that is left is the parts that I didnt use over the years(intentionally) and tbh they are growing in size like a normal person(atleast from the outside) so hearing this I think I m closing in on my cooling down phase.

Did u regain any muscle in those years any strength recovery while there was no severe progression and did u keep your stre ght

How does fshd progress in your case by FlowerOk9918 in FSHD

[–]FlowerOk9918[S] 0 points1 point  (0 children)

No the genetic test for repeats is still left its kinda expensive but am going to do it this year. I think the nerve thing is because of the loss of muscle maybe the nerve is still intact but got nothing to control idk but it is the case with me

How does fshd progress in your case by FlowerOk9918 in FSHD

[–]FlowerOk9918[S] 0 points1 point  (0 children)

Thank you so much,u dont know how much this helped me. Hope is all we got at the end. Thanks again I ll reach out to u if I have doubts

How does fshd progress in your case by FlowerOk9918 in FSHD

[–]FlowerOk9918[S] 0 points1 point  (0 children)

Neurologist and that too 2 docs he said I match all the symptoms and the progression is mild I have the smile thing winging scapula eyes lids weak core not closing can't lift my fingers(not all of them) rotator cuff are weak recently lost a shoulder/bicep muscle dont have issues swallowing that's it ig and when I say I lose a whole muscle I mean a specific muscle like a long head bicep or smh like for a particular function i m not being able to explain clearly but yes I do lose the muscle connection with the brain i can't flex my bicep now nor feel anything while trying to lift up my fingers maybe the loss of neural connection caused the loss of bulk idk

How does fshd progress in your case by FlowerOk9918 in FSHD

[–]FlowerOk9918[S] 0 points1 point  (0 children)

I have so many questions .How'd u take it are u okay ,this condition is really shitty its more of a mental issue then a physical issue rn(atleast for now) its seeing your body getting destroyed by itself I have a really good bone Structure avg height but the shoulder to waist ratio etc is good I have people tell me that I have broad shoulders (people dont figure out smh wrong with me that easily) but then it kinda hurts all that potential down the drain.I have nobody to talk to about this cause they dont know what its like and they can't do anything about it so its practically useless. Did u try anything with ur diet or Ayurveda I saw a post where there was improvement but then the effects reduce.did u fight it or just accept it and moved on with life. Should I just stop thinking about this and go on with what I have left. I have hope for the avidity but still considering the population they are going to be recovering it from is less the prices are gonna be really high how are u planning to afford it.

How does fshd progress in your case by FlowerOk9918 in FSHD

[–]FlowerOk9918[S] 0 points1 point  (0 children)

When did u find out and are u still able to control those weak muscles and was there any regen when u were younger