Someone recognizes my story? Serious muscle problems since 8 years.

[Tractor Boy]

Dutchie, I must agree with billbell52. PLS is so rare, many neuros will never encounter a case. I agree you should see neuros who specialize in ALS, since the disorders are so similar in nature, symptoms and treatment.

Billbell52, I think Dutchie's been battling this since age 15, not 21. TB

 

[Dutchie]

@billbell52 Thanks for your advice. Actually my symptoms started even when I was around 15 years old. I have once seen a doctor specialized in ALS, she decided to take me intern the hospital where here colleagues didn't take me serious. Half a year ago I got rejected. That is what makes it really hard for me.. Strange thing is that the ALS specialist said my reflexes were extremely high... and afterwards they send me home... I know the pain is something that can also be related with other diseases, but the pain is caused by walking with weaker/stiff leggs. And my hamstrings are so stiff and lot of the times in cramp that causes the pain I think.. I will go to the doctor this week to see which hospital is specialized, although I did was in the best hospital in my country.

 

[AKmom]

I too get pain from walking and overdoing. The more I push myself the more my pain level goes up. The pains are usually in tendons I noticed, with occasional, very painful muscle knots that do not release even with meds, but massage helps. Then there is the secondary pain of injuries caused from falls because of failed muscles in PLS. So pain can very much be caused by PLS but can be treated and also avoided by not overdoing.

Good luck on your search for correct diagnosis. Took me 17 years. My symptoms started in my early 30's. I am 23+ years into it now and still fighting to be as independent as possible. Only advice I can give is live life to the fullest and try not to stay focused on circumstances too long, they are what they are and will sort themselves out soon enough. I also tend to be a believer in God so that also helps me get through my day.

Sorry your having to go through so much at a young age. Take care.

 

[Tractor Boy]

Dutchie, I hate to say this, but your health system (over there) sucks! And to be turned away by them is totally unacceptable.

With that said, I really wish you could come to the USA and get a proper diagnosis and treatment.

May I suggest STRETCHING exercises to help your muscles from cramping. This works! For hamstrings, try this; sit on your bed with one leg hanging off the bed. With your other leg on the bed, reach down and grab your toes. Gently pull back and you will feel your hamstring stretching. You will immediately figure out how to stretch the hamstring. LET IT STRETCH as much as possible. Hold that for 30 seconds! (I always sing the Happy Birthday song twice for timing). Then do the other leg. Then repeat for a second time for each leg. Do this routine (at least) twice per day and I GUARANTEE it will help you!

Best to you, Dutchie! Let me know, TB

 

[Dutchie]

@Tractor Boy thanks for the tip! I already did this a few times I also know that massages do help me a little, although it is for a short period. I was wondering if you also feel worse in warm periods. I do like the summer weather but too hot makes me even weaker, the neurologist said that was normal for 'people like me'. My mind loves the sun, my body not so much haha!

 

[Tractor Boy]

Dutchie, I have found good stretching exercises help relieve my tight leg muscles and cramps more than anything else. So keep doing the hamstring stretches at least twice per day. You will soon find you can stretch a little bit farther every day. IMPORTANT: DO NOT "ROCK" (back and forth) while stretching! A constant stretch (as much as you can tolerate) is the way to avoid injury and get best results.

I also take Baclofen for my spasticity. However, I was still getting occasional leg cramps in bed. My neuro added tinZANidine (low dose) to my Baclofen med regimen and I have not had a cramp since!

You mentioned tight hamstrings, but you may benefit even more by developing a stretching routine for other leg and butt muscles as as well. They are readily available from "Dr. Google."

Please note, I looked through some stretching exercises online, and most are geared toward "healthy" individuals. So you may have to improvise a little, like I have. Most exercises show relatively short repetitions (like repeated 5 second durations). HOWEVER, medical Physical Therapists tell me to always "hold" the stretch for 30 seconds (rather than short repetitions).

Hot weather does not bother me as long as I stay shaded. I do NOT do well in the cold at all.

Hope this works out for ya! Keep me informed...Tractor

 

[MaxEidswick]

> I do NOT do well in the cold at all.

Ditto that!

 

[Dutchie]

Haha I never said I like the cold... I also can not stand the cold. But around 30 degrees is also giving me struggles. 25 degrees is perfect for me.