Dutchie
Member
- Joined
- Nov 12, 2013
- Messages
- 25
- Reason
- Learn about ALS
- Country
- NL
- State
- Noord - Holland
- City
- Hilversum
Hey guys,
I follow this forum for about a year now and didn't know if I should post my story in this topic, but I am a little concerned. Good thing to know: I do not think I do have ALS, but clinical research shows high neuron problems, they thought it was suspicious. Clinical research is related to PLS, but because of my age they got doubts. Because of the progression I feel and the insecurities I decided to write this down in this topic, because here it seems you can talk about it.
This are not my own speculations, but noted by several doctors and neurologists.
My story starts about 8 years ago, when I started to get cramp/stiffness in my upper legs. I wasn't worried at all. I was playing football and I had to stop with that, but I was sure I would return to the football game again. This was a start of an awful period for me. The cramp/stiffness in my legs was getting so heavy that I had to sleep 5 hours every afternoon to get some rest. The cramp appears when I sit, or walk, so actually always. I went from department to department in the hospital, but nobody could find something. I was extremely exhausted, but still hoping for a good ending. In these years the cramp slowly starts to take over the rest of my legs too. When I look back it was a slow progress, but very notable. A year before I could easily play a football match, a year later walking half an hour was a disaster. No doctor could tell me what was wrong with me. Five years of living with these symptoms totally knocked me out. I had to stop with my study and fun stuff too. The cramp/stiffness was so worse that I couldn't even fly for two hours. (example)
In those five years a lot has changed, without even noticing it. It feels like it sneaks into my body. All those 'extra' things I experienced were for me side effects of being so exhausted. For example : talking became harder, I couldn't lift my arms anymore. Everytime the doctors told me how important it was to keep moving, thats what I did all those years. Lots of fysio to try to build something up. After 5 1/2 years I went back to the doctor again, because it only went backwards and i didn't seem to gain any strength at all. After a few stops I ended up with the neurologists from an academic hospital. I have seen neurologists before, so I was not worried that they would find something scary. During my first appointment they told me something is wrong. That they could see the weakness, especially in my speaking. They told me I speak like someone with muscle weakness. Tests with a speech therapist confirms that. My tongue 'lays down like a drunk person' and I speak through my nose. Besides that they noted fasciculations. They tested me on myasthenia gravis, but that was negative. The same appointment some super visors came to check me out. They looked worried and told me that my reflexes were extremely high, and noted hyperreflexia in my upper knee in combination with a high tone... They also noted weakness in my arms and at that time I was also developing a drop foot. ( Nowadays my right foot always swings to the side ). The MRI and EMG were clean. They only saw something strange in my spinal conner cord, but that didn't bother them. A muscle biopsy didn't help also. Conclusion: We do see something is wrong, but we don't know yet what.
At that time the main symptoms were: weakness ( speaking, arms, legs) , hyperreflexia, cramp/stiffness. I had to buy a wheelchair, because after 10 minutes my legs are so weak and stiff.. they feel sour and I drop down my calves..
Now 2 1/2 year later I don't know what to do anymore. It seems to go so slowly…One year ago I found out that my arms are getting weaker.. They are so weak that I can not even spray with a spraycan anymore. I had to ask a friend to spray shaving creme. I can not plug all the plugs in anymore. (Don't know if this is right English). Eating with a knife and a fork at once is very difficult. I can not bring the fork to my mouth with my left arm, so I will move my head to the fork. I never can open bottles, or cans. I can not lift my arms above my head, typing is also very difficult ( took me 3 sessions to finish this topic). The last months my left arm seems to be weaker day after day. I can not hold an object in my left arm, my muscles immediately get in to a cramp. This is a big struggle for me, right now I am typing with one hand. And my hand looks like a crawl, and it is always a little into a fist. Since two years I have to use a wheelchair for walks longer than 20 minutes.
I am just wondering what this could be and if someone recognize this. To me it seems to be familiar with PLS. I hope someone can give me advice and maybe even have some tips for exercises etc.
Short list of things I experience
Stiffness in my muscles ( legs, arms, back(
Extremely tired
Pain in my muscles
Cramp in my muscles, especially my calves
Twitching muscles ( noted by the doctors)
Weak voice and difficulties with talking quite long ( noted by the doctors)
Short list of things I experience
Stiffness in my muscles ( legs, arms, back(
Extremely tired
Pain in my muscles
Cramp in my muscles, especially my calves
Twitching muscles ( noted by the doctors)
Weak voice and difficulties with talking quite long ( noted by the doctors)
Thank you for taking the time to read my topic. I hope someone can give me any advice. I hope I didnt bother you with my story.
I follow this forum for about a year now and didn't know if I should post my story in this topic, but I am a little concerned. Good thing to know: I do not think I do have ALS, but clinical research shows high neuron problems, they thought it was suspicious. Clinical research is related to PLS, but because of my age they got doubts. Because of the progression I feel and the insecurities I decided to write this down in this topic, because here it seems you can talk about it.
This are not my own speculations, but noted by several doctors and neurologists.
My story starts about 8 years ago, when I started to get cramp/stiffness in my upper legs. I wasn't worried at all. I was playing football and I had to stop with that, but I was sure I would return to the football game again. This was a start of an awful period for me. The cramp/stiffness in my legs was getting so heavy that I had to sleep 5 hours every afternoon to get some rest. The cramp appears when I sit, or walk, so actually always. I went from department to department in the hospital, but nobody could find something. I was extremely exhausted, but still hoping for a good ending. In these years the cramp slowly starts to take over the rest of my legs too. When I look back it was a slow progress, but very notable. A year before I could easily play a football match, a year later walking half an hour was a disaster. No doctor could tell me what was wrong with me. Five years of living with these symptoms totally knocked me out. I had to stop with my study and fun stuff too. The cramp/stiffness was so worse that I couldn't even fly for two hours. (example)
In those five years a lot has changed, without even noticing it. It feels like it sneaks into my body. All those 'extra' things I experienced were for me side effects of being so exhausted. For example : talking became harder, I couldn't lift my arms anymore. Everytime the doctors told me how important it was to keep moving, thats what I did all those years. Lots of fysio to try to build something up. After 5 1/2 years I went back to the doctor again, because it only went backwards and i didn't seem to gain any strength at all. After a few stops I ended up with the neurologists from an academic hospital. I have seen neurologists before, so I was not worried that they would find something scary. During my first appointment they told me something is wrong. That they could see the weakness, especially in my speaking. They told me I speak like someone with muscle weakness. Tests with a speech therapist confirms that. My tongue 'lays down like a drunk person' and I speak through my nose. Besides that they noted fasciculations. They tested me on myasthenia gravis, but that was negative. The same appointment some super visors came to check me out. They looked worried and told me that my reflexes were extremely high, and noted hyperreflexia in my upper knee in combination with a high tone... They also noted weakness in my arms and at that time I was also developing a drop foot. ( Nowadays my right foot always swings to the side ). The MRI and EMG were clean. They only saw something strange in my spinal conner cord, but that didn't bother them. A muscle biopsy didn't help also. Conclusion: We do see something is wrong, but we don't know yet what.
At that time the main symptoms were: weakness ( speaking, arms, legs) , hyperreflexia, cramp/stiffness. I had to buy a wheelchair, because after 10 minutes my legs are so weak and stiff.. they feel sour and I drop down my calves..
Now 2 1/2 year later I don't know what to do anymore. It seems to go so slowly…One year ago I found out that my arms are getting weaker.. They are so weak that I can not even spray with a spraycan anymore. I had to ask a friend to spray shaving creme. I can not plug all the plugs in anymore. (Don't know if this is right English). Eating with a knife and a fork at once is very difficult. I can not bring the fork to my mouth with my left arm, so I will move my head to the fork. I never can open bottles, or cans. I can not lift my arms above my head, typing is also very difficult ( took me 3 sessions to finish this topic). The last months my left arm seems to be weaker day after day. I can not hold an object in my left arm, my muscles immediately get in to a cramp. This is a big struggle for me, right now I am typing with one hand. And my hand looks like a crawl, and it is always a little into a fist. Since two years I have to use a wheelchair for walks longer than 20 minutes.
I am just wondering what this could be and if someone recognize this. To me it seems to be familiar with PLS. I hope someone can give me advice and maybe even have some tips for exercises etc.
Short list of things I experience
Stiffness in my muscles ( legs, arms, back(
Extremely tired
Pain in my muscles
Cramp in my muscles, especially my calves
Twitching muscles ( noted by the doctors)
Weak voice and difficulties with talking quite long ( noted by the doctors)
Short list of things I experience
Stiffness in my muscles ( legs, arms, back(
Extremely tired
Pain in my muscles
Cramp in my muscles, especially my calves
Twitching muscles ( noted by the doctors)
Weak voice and difficulties with talking quite long ( noted by the doctors)
Thank you for taking the time to read my topic. I hope someone can give me any advice. I hope I didnt bother you with my story.
