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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.
 
Firstly, welcome!

I am not personally aware of what the Netherlands medical culture is like regarding the diagnosing or naming of conditions that affect the upper motor neurons. Ultimately, though, as long as you have been tested for treatable or curable conditions and are following up with a good doctor, the name matters much less than how it affects your life. The exception is proving you need help due to your condition. Do you need to a firm diagnosis to qualify for social insurance or any disability support programs in your country?

You are correct, upper motor neurons are very hard to test. The symptoms are measurable, but the exact cause can't be found by scan most of the time. There are some tests (gene tests, spinal taps, MRIs) that can sometimes shed some light on the situation. There is a lot more waiting to see how things go than there is in the diagnosis of other types of conditions.

Have they given you anything for the stiffness? Whatever the root cause, there are drugs to help with the kind of stiffness you describe. Some people hate the side effects too much to take them, but it would be good to have the option. Others have used botox, especially with their voice muscles. Some have had success by working with a knowledgeable physical therapist who understand spinal conditions. What kind of help have you gotten?

You are in the right forum. Not everyone here has PLS, but everyone shares UMN symptoms: the stiffness, hyper tone, hyperreflexia, etc. Many still don't have a firm diagnosis for why that is, so you will hardly be the first. That means not everything that someone else says will apply to your situation, especially as regards prognosis, but the day to day living advice and commiseration could be helpful.
 
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your so young to be going through this.....i concure with your symptoms...your neuros have given up, thats no surprise.....but dont let them off the hook, keep pushing them ,,,,because your young there is hope it is something else less daunting....the best to you johnny
 
Thank you for your answer. I'm glad I found this forum.. It's really weird but the doctors never gave me any medicine.. It actually feels like they dont take me that serious.. I'm desperately seeking for answers, but thats a really long, long road. I'm back to school now and I'm really happy that I can work on my future. I had several MRI's, EMG's, biopsy, blood tests, skeleton scan.. I will definitely browse through this forum to find tips!
 
Forgot to say in my previous post that I also went to different hospital sections. They checked me for rheumatism, intern problems, skeleton problems.. I even had a half year revalidation project, but that didnt help me... That reflexions are quite clear I think, I really hope the problem is somewhere else, but I don't know where because they checked basically everything.
 
yes but duch,,,they check you for everything,,thats the norm..they draw blank and send you away and if things get worse it makes it easier to diagnosed....read becky s replies to the thread of mine .....that makes it clear///johnny
 
Thank you for your help. I have read your topic, recognizeable! I have found a list of doctors who are specialised iN MND in the Netherlands. I think I am gonna ask them for help. I will not give it up. I still think it is easier to accept things if you have a name and prognoses for it..
 
It might also be worth looking to see if there are doctors familiar with HSP or as they might call it there still, Strumpell-Lorraine. Whichever doctor you go to, I would ask why you haven't been tried on an anti-spastic medication like Tizanidine or Baclofen yet. At worse they do nothing and you sleep a lot for a few days, but at best they make you more functional.

In the meantime, if you have any practical questions, rants, complaints, etc, feel free to air them here.
 
I thought HSP only affects the legs? I hope my doctor gives me some medicines.. I really need a solution for the terrible cramp in my hamstrings while I am sitting! That would help me a lot!
 
It certainly sounds like PLS. PLS is a very rare disease. About 50 people get it a year in the US. The age range is between 35 to 66. I have heard of a case of someone getting it at 30. I have never heard of a case at 21. There is something called Juvenile PLS that is hereditary but you are too old. The only doctors I have had any luck with are those that deal with ALS on a regular basis. There is some comfort in having a diagnosis but there cure currently. There are a few medications that may help with symptoms. So sorry to read your post.
 
HSP docs cover PLS as well, they specialize in spastic para or quadriplegia. They are very good at the day to day with UMN symptoms. I was thinking they may spend less time trying to diagnose you and more time trying to make you the most functional person you can be.
 
Thank you for all your answers. It makes me feel that I'm not alone with this problem. I really think my age is a problem with diagnosing , but they also think that I can grew over it. This is so silly. In all these years they never gave me any medicine. I'm trying to live as healthy as possible, smoothies etc. I saw a difference, not with the symptoms but the way I looked changes. I look more fresh now, it's a start? I also tried to build up a condition, but it just doesnt work :( I started to walk a year ago, and after a couple of months it was so awful to walk that I had to stop. My doctor says that if the muscle is not damaged you can build up your condition, but I actually dont think this is true. I have tried this so many times..I decided to bike, what I really like, but also after a couple of months it only got worse instead of better. Do you have any tips for walking? The doctor advised me to do a walking therapy but I don't know what to expect from that.
 
For walking go slow, use a cane- sometimes you can catch yourself before you actually fall, watch your footing- unevenground can through you off balance or catch your foot causing you to fall
 
Walking therapy sounds like what we call "gait training". It works for some folks, I'd try it. If you do try it and it doesn't work, at least your doc will know you are taking him seriously and might respond in kind.
 
I do not have a cane! I am using my hometrainer now! Most of the time only for 5-10 minutes, but it is something! I really want some medicines, but does it makes you really tired? i still need to focus on my schoolwork!
 
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