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Riggo

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A year ago I started having tightness in the muscle in my back between spine and shoulder blade on right side.
Also tingling down both legs that happened more and more often as time went on. If I rode a bicycle, when I finished the tingling was extremely intense.

About 9 months ago I started feeling numbness in my feet, but I still had feeling, they just felt numb. I also started having fasciculations, first in my calves. Now calves, thighs, shoulders, biceps, triceps.

About 6 months ago the tingling was dissipating but suddenly my thighs both felt fatigued. Harder to go up stairs, but no clinical weakness, if I understand that term. Now tingling is gone, numbness is sporadic, fasciculations happen multiple times a day, thighs are still fatigued (still harder to go up stairs), and my fingers now get tight. More on the right hand. Sometimes they actually look swollen, and even when they don’t look swollen they feel that way. I also had a terrible cramp in the back muscle on my right side between my shoulder blade and spine for no apparent reason about a month ago and it still hasn’t loosened up.

I’ve seen a neurologist and had every test possible. Everything is normal. Brain mri clean. MRI’s of spine were clean. Blood tests normal. The neurologist actually said about my symptoms, “sometimes this is how als presents”. Made me nervous. I showed her videos of my fasciculations. I had an emg in which the neurologist only tested the thighs inner and outer muscles and she said it was normal. She referred me to UCSF and said, “I hope you don’t develop als”. At my video appt with the neurologist at UCSF the neurologist said let’s wait and see and I have another appt in 4 months. I read the “read before posting” on this forum and probably wouldn’t have posted here because of the tingling and “numbness” except for the neurologist saying this is how als presents sometimes. Thanks so much for taking the time to read this. I appreciate it so much. Oh I’m 50 year old man.
Thank you, thank you, thank you.
 
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Nikki J

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I wonder if she was referring the twitching rather than the numbness etc. while the vast vast vast majority of twitching is benign and people whose only symptom is that should not worry there is a thought that new onset twitching warrants an emg in 2 groups- genetic carriers of FALS mutations who are obviously extremely high risk and males over 50. You do not mention an emg?
 

Riggo

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Yes my first neurologist did an emg and she said no als. She only tested my thighs, inner and outer muscles both legs. Thanks so much for responding. With all my tests coming back normal and what the neurologist said I’m nervous. I guess just wait and see. I’ve googled my symptoms and I don’t see any other possibilities...
 

lgelb

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Seriously? There are hundreds of other possible factors behind your issues, all way ahead of ALS (which really isn't even on the list), from slumping in your chair , crossing your legs on the sofa, to blood clots. You can also have more than one thing. I'd check in with your internist and ask about a PT referral and consider therapeutic massage for your back. Discomfort in your back can affect your positioning head to toe, causing or exacerbating other problems.

Best,
Laurie
 

Riggo

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Thank you both for replying. Sorry Laurie, my last sentence WAS dramatic. I’ve read about pals saying their first symptom was tingling. I think it’s unusual for sure.
Then when I got the weakness/fatigue in my thighs after experiencing fasciculations for some time it lead me down this road. That and, of course, my first neurologist saying this is how ALS sometimes presents. I’ll see my neurologist at UCSF in person in early January. Thanks again for replying I won’t take up your time again. Thoughts and prayers to you all...
 
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