I am curious if anyone else has had a rapid progression of sympoms in Limb Girdle MD. Seem to be 2 weeks or so and I am already having slight troubles getting in and out of car or grabbing and holding up a kettle.
Thanks all
Just looking for speed possible changes may or can occur.
I can't tell you that there has not been a rapid deterioration in your case, but when I was diagnosed, I started obsessing over everything. I would notice every little thing I did, and think that the disease was progressing faster. In reality my MD was not progressing any faster than it was before the diagnosis, there was (and still is) just a lot of fear and anxiety in the picture all of a sudden.
I also have been diagnosed with a limb-girdle muscular dystrophy. It's pretty clear that I've had this since childhood, but the symptoms weren't very severe and went totally unnoticed until I was in my late 30's. My doctors believe that the progression was very slow and just didn't become noticeable until then.
After my diagnosis, the progression continued slowly. It was aggravating and upsetting, but I could adapt to the increasing weakness and simply change the way I did things. And I got by pretty well, until about two years ago.
My doctor doesn't think the disease is progressing any faster, but I've reached a point where I've become severely disabled. My doctor explained it to me like this: If you start out at 100% strength and lose 3-5% of your strength every year, after a while, it appears like you're getting weaker faster. But in essence, if you take 5% from 100%, it's not overly noticeable since you still have 95% of your strength. But once you reach a certain point, taking 5% away when you only had 50% strength makes it seem like you're losing a lot faster. It made sense to me.
I've had to give up so much because I just don't have the strength anymore.
I have been through many serious and life threatening problems in my life. I am 55 years old and do know my body, along with all regular aches and pains. These are all new ones like aching shoulders and arms and thighs as well. Never had before. Just asking and Thank you foryour esonse.
I also have been diagnosed with a limb-girdle muscular dystrophy. It's pretty clear that I've had this since childhood, but the symptoms weren't very severe and went totally unnoticed until I was in my late 30's. My doctors believe that the progression was very slow and just didn't become noticeable until then.
After my diagnosis, the progression continued slowly. It was aggravating and upsetting, but I could adapt to the increasing weakness and simply change the way I did things. And I got by pretty well, until about two years ago.
My doctor doesn't think the disease is progressing any faster, but I've reached a point where I've become severely disabled. My doctor explained it to me like this: If you start out at 100% strength and lose 3-5% of your strength every year, after a while, it appears like you're getting weaker faster. But in essence, if you take 5% from 100%, it's not overly noticeable since you still have 95% of your strength. But once you reach a certain point, taking 5% away when you only had 50% strength makes it seem like you're losing a lot faster. It made sense to me.
I've had to give up so much because I just don't have the strength anymore.
Thank you for your reply. I have already survived brain aneurysm and stents in my heart following a near fatal M/C accident 29 years ago. I am a 55 year old male and work with 4-600 lbs,
. animals all day and is becoming harder daily.
Cheers and Thank you.
madalot's post summed it up pretty good. I myself also have LGMD. It's classified as "slow" but anyone with this wishes it was even slower.
I am a 48 year old male. I lose maybe 3-5% a year of my strength. What often feels like a "crash" is really just a situation where I've weakened to a point where I can't do something anymore. For instance, all of a sudden I can no longer get up my front steps. My first instinct is "What happened?!" but actually I know I no longer have the strength for that task.
Traditionally, the older you are at diagnosis of MD, the slower the disease will progress. (With the exception of ALS a.k.a. Lou Gehrig's)
I know it's scary. Post here anytime. We're all going through this at one stage or another and we all understand when it feels like people around you don't.
I am 55 and do an extremely physical job. SAeems to be getting harder daily. I work with 4-600 lbs animals all day. In one for or another, from midwife to feediing, pressure washing room and disinfections and meds. Keeps us all hpping and seems to be a bit of a lossing battle. I have lost 21 lbs of muscle mass in the last year or so, and am now finally getting diagnosis.
Thank you for your reply, it helps make sense of it all.
Cheers Bryan.
I sure do agree as I no longer am able to do my heavy physical job. I am pretty sure this disease has been undiagnosed for many years now. I am moving forward still looking for a more sedentary position, but as you know not many companies interested in a 55 yr old male with some limitations.
Still doing well with high hopes for my future.
I also have LGM and was diagnosed at the age of 19. I'm 38 now and I also struggle to get out of a car, walking, getting up and like you lifting a kettle.
I have a lot of symtoms relating to LMG and extreme muscle weakness but to long a story to explain
Adjustment is the worse for me but I'm getting there every time the sytoms weaken my body
Positive attitude, acceptance and a kind of forgiveness was my way of dealing with this all
I hope you're doing OK. Your posts made it sound like your deterioration is rapid, much more so than adults with Limb-Girdle MD would experience. have you learned anything new recently? have you been tested or checked for ALS. Hopefully that won't be the case.
I fully understand struggling at work, trying to "hide" the struggling and eventually telling everyone, and finally having to leave your job. I went through every stage.
