karvin
New member
- Joined
- Apr 14, 2013
- Messages
- 3
- Reason
- Learn about ALS
- Country
- US
- State
- Ohio
- City
- Maumee
I have no idea if ALS is a possibility or not but this seems to be a very good resource place so I figured I would ask. (sorry for the following novel!) I have put in searches for statements on different tests I have had or Dr impressions from my clinical visits and many lead me to ALS information. I don't think I have enough symptoms for ALS but do not know enough about this disease and that is what brought me here and there is a nagging little voice that keeps saying maybe but hopefully not.
I have extreme weakness in my upper legs. To be able to raise from a sitting position I have to walk my hands up my legs for the extra strength. Once in a standing position I have to stand there for a minute or so until I can get my legs coordinated enough to move. It is almost as though my brain is having problems telling my leg to move. I usually have to sway a bit to get the momentum to start moving. If I walk for more than 20 or so minutes I develop a shuffling gate because I am unable to lift my feet up at all. If I lay flat I am unable to straight leg lift my legs up more than a couple of inches. When sitting I am unable to raise my thigh up off the surface more than a couple of inches and cannot hold it up when someone applies any pressure down on it. I am also unable to stand still without swaying. I am also unable to walk on my heels or toes or walk heel to toe. My balance has been effected. If I held on to a wall I could raise my leg up with a bent knee but if I let go of the wall I am unable to balance or hold my leg up.
I did not realize I had any major weakness in my upper body until the last Dr I saw did some tests. I just thought my weakness was part of aging and wasn't as noticeable as my legs. She noticed I have weak facial cheek muscles and upper arm weaknes, slopping shoulders and a cervical hunch and weak neck flexion.
I have severe cramping in my shins that extend down my leg to my feet that cause my feet to pull upwards and my toes pull upwards and apart. I am unable to walk these out like I can with calf cramps and they can last 20-40 min if not longer at times. I do seem to get them more with increased activity.
I do not notice or feel any twitches.
The only real pain I experience is from muscle fatigue and unnatural gait and is mostly in my hips. I can't sleep on my sides because of the lack of muscle support for my hips which causes pain that seems to be deep.
My EMG shows that activation was reduced and full interference pattern was not achieved. There is slow recruitment rate seen in upper motor neuron disease or functional disorder is present.
My muscle Bx was done in the left deltoid and left vastus lateralis shows moderate variations in fiber size with several small angulated strophic fibers and group atrophy. Several nuclear myobags present. The ATPases show angulated atrophic fibers of both type, fiber type groupings and group atrophy. The alkaline phosphatates highlights an occasional regenerating fiber.
I have been trying to get hold of the Dr that did the bx and after a month they connected me to the "fellow" that was with my Dr during the Bx. He said without more information he couldn't give me much information but it was more neurogenic than muscular dystrophy which is what the initial thought was and the reason for the bx. I don't have a folllow up appt with the Dr until June. She said she would contact me sooner with results but so far nothing.
I honestly have been terrified I have mentally created all of these symptoms but everyone has assured me the symptoms are real. I just want a Dx, this not knowing is driving me crazy and has led to sever depression. I am hoping once I have a Dx I can accept it and make a plan and continue to move forward.
I would like to thank you all in advance for any information you share with me. I would give anything to have you say I am in searching in the wrong place.
I have extreme weakness in my upper legs. To be able to raise from a sitting position I have to walk my hands up my legs for the extra strength. Once in a standing position I have to stand there for a minute or so until I can get my legs coordinated enough to move. It is almost as though my brain is having problems telling my leg to move. I usually have to sway a bit to get the momentum to start moving. If I walk for more than 20 or so minutes I develop a shuffling gate because I am unable to lift my feet up at all. If I lay flat I am unable to straight leg lift my legs up more than a couple of inches. When sitting I am unable to raise my thigh up off the surface more than a couple of inches and cannot hold it up when someone applies any pressure down on it. I am also unable to stand still without swaying. I am also unable to walk on my heels or toes or walk heel to toe. My balance has been effected. If I held on to a wall I could raise my leg up with a bent knee but if I let go of the wall I am unable to balance or hold my leg up.
I did not realize I had any major weakness in my upper body until the last Dr I saw did some tests. I just thought my weakness was part of aging and wasn't as noticeable as my legs. She noticed I have weak facial cheek muscles and upper arm weaknes, slopping shoulders and a cervical hunch and weak neck flexion.
I have severe cramping in my shins that extend down my leg to my feet that cause my feet to pull upwards and my toes pull upwards and apart. I am unable to walk these out like I can with calf cramps and they can last 20-40 min if not longer at times. I do seem to get them more with increased activity.
I do not notice or feel any twitches.
The only real pain I experience is from muscle fatigue and unnatural gait and is mostly in my hips. I can't sleep on my sides because of the lack of muscle support for my hips which causes pain that seems to be deep.
My EMG shows that activation was reduced and full interference pattern was not achieved. There is slow recruitment rate seen in upper motor neuron disease or functional disorder is present.
My muscle Bx was done in the left deltoid and left vastus lateralis shows moderate variations in fiber size with several small angulated strophic fibers and group atrophy. Several nuclear myobags present. The ATPases show angulated atrophic fibers of both type, fiber type groupings and group atrophy. The alkaline phosphatates highlights an occasional regenerating fiber.
I have been trying to get hold of the Dr that did the bx and after a month they connected me to the "fellow" that was with my Dr during the Bx. He said without more information he couldn't give me much information but it was more neurogenic than muscular dystrophy which is what the initial thought was and the reason for the bx. I don't have a folllow up appt with the Dr until June. She said she would contact me sooner with results but so far nothing.
I honestly have been terrified I have mentally created all of these symptoms but everyone has assured me the symptoms are real. I just want a Dx, this not knowing is driving me crazy and has led to sever depression. I am hoping once I have a Dx I can accept it and make a plan and continue to move forward.
I would like to thank you all in advance for any information you share with me. I would give anything to have you say I am in searching in the wrong place.