I was diagnosed a year ago. But I've had symptoms for a decade. So I was very angry initially because for years my symptoms and pain were dismissed by various health care professionals. I started grief counseling within two months of getting my diagnosis and I honestly think it saved my life and sanity. Now I am determined to find 'my people' for support and sharing in a way that is only possible with others that are on that same journey

My diagnosis gave me a motivation to eliminate my disability, and I worked out regularly for many years to keep my muscles strong. The only problem was, my inner quads didn't respond much to the workouts, so I became bowleged and had severe dislocation. I was finally introduced to a neurosurgeon who understood CMT and recommended a good orthotics man who also knew CMT. He made me 3 different sets gradually over about 30 years, and today, with my orthotics, I walk straight, don't get tired standing, and I'm an inch taller. I still have very little balance, but it's great to have confidence walking over uneven ground again.

When new the answer for the swallowing problems. Kept driving Uber. I got accused of being drunk a couple times because The DM caused slurred speech . Then uber kicks you off for investigation. Stopped driving a uber after being cat jacked at gun point. Then did DoorDash. Then finally got approved for disability.

Disbelief and shock

I went for years not knowing also, I had lower back pain and couldn’t climb stairs, thought I had slipped disks and it was pinching a nerve in my 30’s. that wasn’t it cause started to see chiropractor, that helped the lower back pain, but it didn’t help issues I was having with climbing stairs, then I got into my 40’s , then started to having problems getting up from being sitting on the floor, between to two issues I was having, it finally started a whole of other problems when I got into my 50’s. Finally found the doctor who would listen to me and upset an MRI of lower back, found a slight slipped disks and stenosis, which led me to Orthopedic doctor, who really listen to everything I said to him on this all started for me, he sends me to Neurology, who properly diagnosed with Limb Gridle Muscular Dystrophy and did bloodwork, which CPK level which confirmed it, that was in May if 2016, I was 52 years old, In that same year, my sister started to having issues like me and she was also diagnosed with LGMD by a different Neurologist and the next year she started genetic testing, which really confirmed our diagnosis and our parents are carriers of recessive gene. We have a hereditary disease that skipped multiple generations, no one else, first cousins, distant relatives/cousins have been diagnosed with LGMD. If they were having any symptoms, they more likely would’ve have known was it was.
The other side of this is, our diagnosis is slow progression, but the unfortunate thing is there no medication to prevent it from progression. So basically we are dying a slow death.
Since my diagnosis I’ve since retired from work it was much for my body to handle a 40 hr a week job and had use a cane then a walker do to falls and now I have a mobility Wheelchair for long distance and I’m using my wheelchair, I have less falls now, but still walk around with a walker, just in a slower pace.
I’m married, we have three adult children, they don’t have any problems with LGMD and grandchildren don’t have any issues whatsoever. So I’m very blessed to know that the buck stops with me! Thankfully.
Wanted to add this, When I was diagnosed with LGMD, I was in shock at first, but also grateful that all those symptoms and signs had a home, what I mean is it: was like puzzle pieces to a puzzle that you couldn’t figure out where they go into the puzzle, but you found there place in the puzzle and puzzle was complete. If that makes sense.