Weakness in legs, small fasciculations

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Riri91

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Learn about ALS
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Paris
Hello to everyone,

Firstly i'd like to excuse in advance for my poor english, it's not my native tongue. Secondly, it may be my anxiety talking. So maybe i don't have anything to worry about.

I'm a 28years old male, who used to do a lot of boxing, but a bit overweight.

I had some health problems in the last years. It started with the loss of my ability to move arms above my head. At this time, my neurologist told me i may have a facioscapulohumeral muscular dystrophy, but sent me to a renowned center in France. For them, it was just that i had broken my nerve, thus, making the movement impossible. I've been trough a heavy surgery, making my left pectoral linked to my left scapula, to help me rise my arm again. I have not regained a full movement, but it's far better than before, no need to complain here. Better than nothing. Surgery was in 2018.

Let's now fast forward December 2019. I have pain in my neck and near my other scapula. MRI reveals a protruding disc near C6-C7. My rheumatologist told me it's not something to worry much about and some physiotherapy will help me. Did it, and indeed it went better. But at this time, i started to feel weird in my legs. Weak, heavy legs. I don't think i've lost any strength in it, still can do squats, push-ups, but i've notived they are midly shaking when i go down the stairs. But sometimes everything is all right. Also, since yesterday i've some fasciculation in my legs, and on the sides of my torso. When i'm sitting in front of the computer, while i'm working, i can notice my foot feels cold.

Did a blood test, everything is okay, only my CK seems high (321 U/L), whereas they says that an adult male should not exced 200 (i did not do any sports prior the blood test).

I'm seeing a neurologist on Friday. I really don't what it could be. I've been trough a lot of problem regarding my health in the last year. I probably should also mention that i'm actually seeing a therapist because of some problem in my personal life, and i'm feeling really anxious, and sad, in my life, overall.

So that's it. I'd like some inputs from you guys. Don't want to bother anyone, but still, als is somewhere in my mind. I'm afraid.

Edit: Also have stiff in my thigh since yesterday. My mom told me she used to have a lot of blood circulation in the legs when she was younger. But it's more of a woman problem right ? Both of my parent are really anxious about me since i told them, because of my health problem in the past 5 years. They both lost relatives in December and are feeling sad, i don't want to worry them more.
 
They could have been right the first time -- you could have an adult-onset muscular dystrophy (of which most are relatively mild), which could elevate the CK (though that can be elevated for many benign reasons). I do not see shaky, heavy legs that are cold as related to the onset of ALS. But it's winter and our legs get cold when we are working in a chair. You could try foot/leg massage, though, even by yourself. There are videos.

I would imagine the neurologist will be reassuring as regards ALS. Meanwhile, try to focus on finding activities you can enjoy, even a short nature walk or listening to music, and of course whatever exercises your therapist advises to manage your anxiety.

Best,
Laurie
 
Thank you very much lgelb for your opinion. Got to say i've been dumb, the symptoms appeared in December 2020, not 2019, so it's quite recent. And i should have precised that only my left side have been under surgery. Not my right side, there, my arm is still okay. Tonight i still have some fasciculations, but my legs are feeling much better. I'll see with my neuro. Have a good day.
 
Well i've been to the neuro, and everything seems okay, according to her. She did not do any EMG, just tested my strength and reflexes everywhere. Told me there was nothing to worry about and that my CK levels were a bit high, yes, but not worrying, for her. According to her, if it was the myopathy i was diagnosed with 5 years ago, it would be already more progressed.

Had a panic attack while sleeping the night before seeing her, really thought i was going to die. Seems everything is related to my anxiety and sad mood, maybe associated with a CFS. She prescribed me magnesium, an ordonnance to go to the swimming pool. Also an MRI of my lower back, just in case there was something there. I never thought my mental health would give me those kind of physical symptoms.

Should have not bother you guys. I'm wishing the best for all of you. Hope one day those diseases will be curable.
 
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