PaulyD
New member
- Joined
- Dec 10, 2022
- Messages
- 8
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- PA
- City
- Philadelphia
This is an update to an original post that I couldn’t add to. After experiencing twitching (and burning sensations) in November, I saw a neuro in December. Muscle pain but no clinical weakness. Normal exam and normal EMG (I got a grid sheet with a bunch of 0's and "normals" on it).
I then sought out an ALS/neuro-muscular specialist (university teaching hospital) who said my exam was normal and she didn't see any signs of any neuro disease "at this time." She told me to drink pickle juice and she wants to see me again in 6 months.
Since December, things seem to have progressed.
Constant muscle pain. The kind of pain that is so intense that I feel like I need to go to the ER. This is whenever I have to do any task whatsoever. Using a steering wheel, walking, doing dishes. The muscles in my forearms or legs or shoulders or arms tremble and hurt terribly while I'm doing any task and then start twitching after I'm done. Burning pain in shoulder and back. Down arm.
Index finger now seems to always be shaking when in use. I can barely type at work. Fingers aren't hitting the right keys. I can't lift my equipment at work without intense pain and shaking. I always feel like someone is pushing down on my arms when I lift anything. I limp sometimes on one leg because it's very stiff. My muscles look like I'm an Olympic athlete but I never work out. People around me are "jealous" because of how muscular I have become. I've also lost 40 pounds in 4 months. My family cannot get over how tiny my arms and legs look. I can still win against my wife and 24 yr old daughter in arm wrestling -- but will have twitching and severe pain after. Not falling when walking but a lot of balance issues. Struggle to wipe shoes on carpet.
Tons of blood work and it all comes back great. CK level was at 59. Sleep study diagnosed Central Sleep Apnea (started BiPap). PCP sent me to PT and they said every muscle in my body seems tight but they don't know why. Originally neuro has started me on Gabapentin and it has seemed to help with sleep and twitching somewhat -- but not the muscle pain/problems. She's out of options as is my PCP. I will see ALS specialist again in 2 months.
I'm sorry for the long message and bothering you all with things that don't seem to match info in the stickies. I'm not looking for a diagnosis from you all but I'm really just looking for ANY advice because of all the info and experience you have. Does this seem like what happens before muscles fail? Thank you so so much.
I then sought out an ALS/neuro-muscular specialist (university teaching hospital) who said my exam was normal and she didn't see any signs of any neuro disease "at this time." She told me to drink pickle juice and she wants to see me again in 6 months.
Since December, things seem to have progressed.
Constant muscle pain. The kind of pain that is so intense that I feel like I need to go to the ER. This is whenever I have to do any task whatsoever. Using a steering wheel, walking, doing dishes. The muscles in my forearms or legs or shoulders or arms tremble and hurt terribly while I'm doing any task and then start twitching after I'm done. Burning pain in shoulder and back. Down arm.
Index finger now seems to always be shaking when in use. I can barely type at work. Fingers aren't hitting the right keys. I can't lift my equipment at work without intense pain and shaking. I always feel like someone is pushing down on my arms when I lift anything. I limp sometimes on one leg because it's very stiff. My muscles look like I'm an Olympic athlete but I never work out. People around me are "jealous" because of how muscular I have become. I've also lost 40 pounds in 4 months. My family cannot get over how tiny my arms and legs look. I can still win against my wife and 24 yr old daughter in arm wrestling -- but will have twitching and severe pain after. Not falling when walking but a lot of balance issues. Struggle to wipe shoes on carpet.
Tons of blood work and it all comes back great. CK level was at 59. Sleep study diagnosed Central Sleep Apnea (started BiPap). PCP sent me to PT and they said every muscle in my body seems tight but they don't know why. Originally neuro has started me on Gabapentin and it has seemed to help with sleep and twitching somewhat -- but not the muscle pain/problems. She's out of options as is my PCP. I will see ALS specialist again in 2 months.
I'm sorry for the long message and bothering you all with things that don't seem to match info in the stickies. I'm not looking for a diagnosis from you all but I'm really just looking for ANY advice because of all the info and experience you have. Does this seem like what happens before muscles fail? Thank you so so much.
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