How is hyperreflexia related to a MND?

[Dutchie]

Hello,

I do not want to bother anyone here, but I have some questions about hyperreflexia related to a motor neuron disease. I've tried to keep my long story short.

This are not my own speculations, but noted by several doctors and neurologists.

My story starts about 7 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. 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 1 1/2 year later I don't know what to do anymore. It seems to go so slowly…This summer 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). My left arm is stiff all the time, it hurts so much and sometimes it bubbles ( thats how I call and experience the fascinations). When I talk it feels like I have to push the words out of my mouth, talk just a little drunk. Nothing seems to help.

I have posted this because they did saw some symptoms that were wrong.. They wrote it down in my file and they stopped with helping me. Now my question: could this be related to a motor neuron disease? I recognized myself in PLS patients, but I am worried about my arms. Is it possible that tests could change in 1 1/2 year? Because I am young , 22, they seem to take me less serious. But clinical tests confirms the weakness , stiff legs and hyperreflexia. I didn't have this invaliding arm weakness the last time I saw a doctor. My friend, she's a fysio was worried.

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)
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. ( noted by the doctors)
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 can barely move.
My right leg is dangle, and I sometimes have a foot drop..
I can not lift my arms up above my head

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.

 

[Tokahfang]

Dutchie, most of what you talk about is pretty clear issues with your Upper motor neurons. MND's aren't the only thing that affect them, but hyperreflexia and spastic weakness are defintely a UMN problem. Upper motor neurons can also be affected by other diseases (MS, for instance) or mechanical problems, but with your progression I think it is not unreasonable to assume a UMN disease.

Have they helped you with symptom control, at least? Have you tried anti-spastic drugs?

 

[Dutchie]

Thank you for your answer. They did gave me diazepam, what helped a little during daylight and good in the nights. The only thing was that they make your muscles even weaker so I almost couldn't walk anymore. I use them when I am on a trip with a wheelchair or to sleep better. They did think about MS, but the MRI's from the brain and the spinal cord were clear. It feels the most frustrating that it keeps going worse, and the doctors sort of gave up. Is it reasonable for doctors to re think their conclusion after a year? It feels like the doctors think different, because I am so young. They do see I have the symptoms but don't believe I actually could have something in that direction. Last year I did have a MND expert as a doctor. She took me serious, because a week later I was in the hospital for a few days for tests. Now they assume that fysio can take away those symptoms, but after 5/6 years of fysio I do not believe in it anymore. I have heard that it could take very long before they could get the right conclusion in this area. I still hope it is something innocent, but my history says something different...

 

[Tokahfang]

Upper motor neuron stuff often takes a very, very long time to diagnose. So you're not alone there. Pure UMN diseases also are currently all untreatable and incurable, so that can't be very motivating for the docs in your life.

I'm sorry that you're not getting much support. That is the main thing it seems you're lacking for not having a diagnosis. :/ Could you perhaps have your physio folks write a letter to the neurologist about the lack of results?

 

[Dutchie]

It absolutely rules my life at the moment. I already had a second opinion, 4 months ago.. It may sounds stupid but I think I just have to wait until I am even weaker than I already am. Right now I am looking for any medicines that might help, I have also read a lot of good stuff about drinking gin tonic. Any experience with it?

 

[Tokahfang]

I don't personally, no. I think a few people on the HSP/PLS-friends mailing list had some small improvement, but by my memory it didn't seem like it was helpful to most. It was a small enough sample I would be tempted to blame the reverse of the placebo effect.

For what it's worth, I had visited the tops of mountains and gotten married, all in a wheelchair, before diagnosis. It doesn't have to be something you sit around waiting for.

 

[Dutchie]

Sure, after one year of nothing I started to study again. I'm going to the second year now from art school. I am proud that I achieved that, and everyone accepts me the way I am. The only is that it exhausts me so much, and I lost 6 kg in 5 months. I already was really thin so it did worry me a bit.. I am always hungry and I eat a lot, really slow, but I love to eat. 6 kgs is quite a lot for me. Before I weight 50 kg, and after 4 months only 44kg. I am looking for a type of food that helps me to gain weight a little more.