TLS36
04-02-2008, 02:50 PM
I am a 47 year old male with undiagnosed neuromuscular disorder.
My father, two of his cousins and two of his uncles all walked with canes and walkers from their late fifties on. All males, none of the females were affected. The main problem is extreme stiffness in the legs and can't lift their arms above the head. They do not fall much and instead of having flaccid muscles or limbs theirs are stiff and almost hard. No atrophy really- They look normal muscle wise. None were ever diagnosed and most have since died.
I began having problems in my mid forties about ten years earlier than them. I was seen by my local neurologist who performed an EMG and NCV and blood work. My CK level were only slightly elavated and close to normal- I think 166. My nerve conduction was normal but my EMG was abnormal. My EMG showed positive waves, +1 fibs and fasiciculations. I also have increased insertional activity in all muscles. EMG suggested a myopathic process going on.
I was sent to a MDA center where the repeated the EMG with the same results and then did muscle biopsy. Muscle Biopsy showed only unspecified changes. I was then DNA tested but I tested negative for all of the ones they tried. They tested for DMD, Becker and one form of LGMD.
I was sent to a Functional capacity exam by my neurologist and I couldn't do the leg strength properly so he told me not to go back to work. It has since got in my shouders and hands.
My main complaints are stiff muscles that become sore for minor use way out of proportion to the amount of use. My hands and feet hurt bad with any use. I cannot grip anything long without an aching pain. I have fasiciculations all over my body and cramps everywhere. I limp and my gait is shortened and I cannot walk are stand for very long.
Does anyone have these problems or does this seem familiar to anyone?
My diagnosis now is undiagnosed neuromuscular disorder probably familial. I am taking balcofen, valium, and betablockers but nothing helps. I need some relief as I would like to go back to work. Thanks
My father, two of his cousins and two of his uncles all walked with canes and walkers from their late fifties on. All males, none of the females were affected. The main problem is extreme stiffness in the legs and can't lift their arms above the head. They do not fall much and instead of having flaccid muscles or limbs theirs are stiff and almost hard. No atrophy really- They look normal muscle wise. None were ever diagnosed and most have since died.
I began having problems in my mid forties about ten years earlier than them. I was seen by my local neurologist who performed an EMG and NCV and blood work. My CK level were only slightly elavated and close to normal- I think 166. My nerve conduction was normal but my EMG was abnormal. My EMG showed positive waves, +1 fibs and fasiciculations. I also have increased insertional activity in all muscles. EMG suggested a myopathic process going on.
I was sent to a MDA center where the repeated the EMG with the same results and then did muscle biopsy. Muscle Biopsy showed only unspecified changes. I was then DNA tested but I tested negative for all of the ones they tried. They tested for DMD, Becker and one form of LGMD.
I was sent to a Functional capacity exam by my neurologist and I couldn't do the leg strength properly so he told me not to go back to work. It has since got in my shouders and hands.
My main complaints are stiff muscles that become sore for minor use way out of proportion to the amount of use. My hands and feet hurt bad with any use. I cannot grip anything long without an aching pain. I have fasiciculations all over my body and cramps everywhere. I limp and my gait is shortened and I cannot walk are stand for very long.
Does anyone have these problems or does this seem familiar to anyone?
My diagnosis now is undiagnosed neuromuscular disorder probably familial. I am taking balcofen, valium, and betablockers but nothing helps. I need some relief as I would like to go back to work. Thanks
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michigani
04-02-2008, 03:56 PM
TLS,
I am also a 47 year old male with an undiagnosed MD. But mine is a Limb-Girdle type. Much of your story sounds similar to mine...except for the stiffness. My dad had LGMD, His father and brother were unaffected but we recently learned through a family tree project that my dad's grandmother died in 1910 bedridden of a debilitating illness. We're thinking MD, probably a dominant form, meaning you can get it from only one side of your family and it can skip generations.
I won't write a 5000 word post but you can left-click my username and read my other MD posts. I've posted well over 200.
I've had about 6-7 DNA tests, biopsies, the works for 6 years now. DNA tests are always negative. Biopsy showed shriveled muscle cells and necrosis (scattered dead cells). My main symptoms are I have great difficulty climbing stairs and getting up out of chairs. In fact it's become basically impossible lately. Also I was slow as a kid.
Check out my other posts if you like. You may find some similarities even though we probably suffer from different types of MD. I can barely walk but can still lift 5 pound dumbbells over my head.
Best of Luck,
Mark
I am also a 47 year old male with an undiagnosed MD. But mine is a Limb-Girdle type. Much of your story sounds similar to mine...except for the stiffness. My dad had LGMD, His father and brother were unaffected but we recently learned through a family tree project that my dad's grandmother died in 1910 bedridden of a debilitating illness. We're thinking MD, probably a dominant form, meaning you can get it from only one side of your family and it can skip generations.
I won't write a 5000 word post but you can left-click my username and read my other MD posts. I've posted well over 200.
I've had about 6-7 DNA tests, biopsies, the works for 6 years now. DNA tests are always negative. Biopsy showed shriveled muscle cells and necrosis (scattered dead cells). My main symptoms are I have great difficulty climbing stairs and getting up out of chairs. In fact it's become basically impossible lately. Also I was slow as a kid.
Check out my other posts if you like. You may find some similarities even though we probably suffer from different types of MD. I can barely walk but can still lift 5 pound dumbbells over my head.
Best of Luck,
Mark