Dutchie
Member
- Joined
- Nov 12, 2013
- Messages
- 25
- Reason
- Learn about ALS
- Country
- NL
- State
- Noord - Holland
- City
- Hilversum
Dear All,
I hope I don't bother you with my long story, but I am looking for help! Hopefully I posted this in the right category!
I'm a woman from 21 years old and I live in The Netherlands. I am desperate and I need some help. What's my story? The problem started when I was about 15 years old. I used to play football and I had really strong legs. The muscles in my back were really painful, but that didn't disable me. When I was almost 17 the muscles of my legs started to hurt. It fell like a sort of cramp and stiffness. I thought my back was the problem, but the doctors said that my back, instead of the scoliosis, was fine. During that time it was already really hard for me to sit, because my hamstrings were so painful, stiff and it feels like cramp. I of course had to stop with playing football, because I couldn't run anymore. I went to a lot of different doctors but they just couldn't find the problem. My muscles were going backwards and the stiffness in my legs was from my hamstrings till my toes. I've tried almost every therapy, went to every doctor but they just couldn't find the reason. I even started to lose my strength in both of my arms. I can not lift them up very well anymore. One year ago I met some doctors in an academic hospital who wanted to help me. It was a neurologist. In my first appointment they noticed that my voice was really weak and that my reflexions were extremely. They noted hyper reflexia and the tone in my muscles was too high. In that time I even couldn't go to school anymore because I had so much pain and I was too tired to do anything. I was happy that they took me serious but several tests didn't show anything. I also can not stand still, my muscles are always busy and twitching. For a couple of months now my eyes and several muscles in my face are twitching really often by itself.. Last week I heard that the doctors quit the research, so I am really desperate now. Why do I post this on this forum? Because I have read about PLS and I actually think I have exactly the same symptoms.
My Symptoms
Stiffness in my muscles ( legs, arms, back(
Extremely tired
Pain in my muscles
Cramp in my muscles, especially my calves
Twitching muscles
Weak voice and difficulties with talking quite long
I can not walk normal anymore. That cramp and stiffness in my calves is so heavy that I had to buy a wheelchair for distances longer than 15 minutes.
When I grab something it takes long for my muscles are in the normal position again.
Repeating movement is hard for me, I eat very slow..
I can't do anything with my arms without a table to lean on..
When I'm standing still from the first minute I feel that my muscles are getting stiffer and stiffer and also more painful.
Hyper reflexia plus high muscle tone ( noted by the doctors)
When I'm walking I just feel my muscles are getting stiffer and stiffer… After 10-15 minutes they are so stiff and cramp full that I only can walk on my toes.
My right leg is dangle, and I sometimes have a foot drop..
When I'm in a hurry my muscles are really shaking afterwards.. feels like I cant control them anymore..
When I read about PLS i recognized myself in the symptoms, but also in the story that none scan can proof PLS. Thank you for your time.
I hope I don't bother you with my long story, but I am looking for help! Hopefully I posted this in the right category!
I'm a woman from 21 years old and I live in The Netherlands. I am desperate and I need some help. What's my story? The problem started when I was about 15 years old. I used to play football and I had really strong legs. The muscles in my back were really painful, but that didn't disable me. When I was almost 17 the muscles of my legs started to hurt. It fell like a sort of cramp and stiffness. I thought my back was the problem, but the doctors said that my back, instead of the scoliosis, was fine. During that time it was already really hard for me to sit, because my hamstrings were so painful, stiff and it feels like cramp. I of course had to stop with playing football, because I couldn't run anymore. I went to a lot of different doctors but they just couldn't find the problem. My muscles were going backwards and the stiffness in my legs was from my hamstrings till my toes. I've tried almost every therapy, went to every doctor but they just couldn't find the reason. I even started to lose my strength in both of my arms. I can not lift them up very well anymore. One year ago I met some doctors in an academic hospital who wanted to help me. It was a neurologist. In my first appointment they noticed that my voice was really weak and that my reflexions were extremely. They noted hyper reflexia and the tone in my muscles was too high. In that time I even couldn't go to school anymore because I had so much pain and I was too tired to do anything. I was happy that they took me serious but several tests didn't show anything. I also can not stand still, my muscles are always busy and twitching. For a couple of months now my eyes and several muscles in my face are twitching really often by itself.. Last week I heard that the doctors quit the research, so I am really desperate now. Why do I post this on this forum? Because I have read about PLS and I actually think I have exactly the same symptoms.
My Symptoms
Stiffness in my muscles ( legs, arms, back(
Extremely tired
Pain in my muscles
Cramp in my muscles, especially my calves
Twitching muscles
Weak voice and difficulties with talking quite long
I can not walk normal anymore. That cramp and stiffness in my calves is so heavy that I had to buy a wheelchair for distances longer than 15 minutes.
When I grab something it takes long for my muscles are in the normal position again.
Repeating movement is hard for me, I eat very slow..
I can't do anything with my arms without a table to lean on..
When I'm standing still from the first minute I feel that my muscles are getting stiffer and stiffer and also more painful.
Hyper reflexia plus high muscle tone ( noted by the doctors)
When I'm walking I just feel my muscles are getting stiffer and stiffer… After 10-15 minutes they are so stiff and cramp full that I only can walk on my toes.
My right leg is dangle, and I sometimes have a foot drop..
When I'm in a hurry my muscles are really shaking afterwards.. feels like I cant control them anymore..
When I read about PLS i recognized myself in the symptoms, but also in the story that none scan can proof PLS. Thank you for your time.