rom623
Active member
- Joined
- May 7, 2009
- Messages
- 41
- Reason
- Lost a loved one
- Country
- US
- State
- GA
- City
- Atlanta
I have noticed there are a few people posting now that seem to have similar issues to what I am having. Does anyone have ideas for any types of specialists that might make sense to pursue - rheumatology, infectious disease, back to neuros, etc. - given the following?
I have been told by 5 neuros, including the top 2 ALS doctors in GA, that there is NOTHING wrong with me after exams, MRIs, blood tests, 2 single-side and 1 partial EMG/NCV. It's all in my "head". That's great! But still, I am dealing with a progression where muscles all over my body seem increasingly floppy and weak, along with fascics and thinning (like the back of the shoulder muscles gone, shins now very bony, etc.). If the neuros throw you out, where do you go next? (BTW the psychiatrist sees nothing wrong on his end either, after a year of visits.) I am a male in his forties.
Here is the progression:
Early 2007: feet and lower legs were strangely still upon waking - relaxed much more than normal. Then I started waking up with hands strangely still and stiff. Then, I got the first fasciculations - in the genitalia (!) - try Googling that one :lol:
Late 2007: started taking cholesterol drugs (statins) - after 2 weeks, stiffness rapidly spread up arms and legs over a few days, and then muscles became tight all over from head to toe, like a giant rubber band. I quit taking the drugs. I have since read bad things about statins and nerves / muscles.
December 2007: Weakness started rapidly attacking all over - stomach valve to the esophagus, causing acid to pour up at night; fingers; arms; shoulders; swallowing; diaphragm. Basically, full-body muscle floppiness/weakness progression. Fasciculations and occasional muscle jerking started. Fascics seem to stay in one area for a few days, followed by weakness in that area.
Since then: sleep/good attitude returned, and I am able to function, but more and more, lifting arms, chewing, climbing, etc. seem harder. Not a full linear progression, more like - very noticeable dip, followed by improvement but not back to original levels. For example, some days the head feels like a bowling ball, then some days not noticeable. But I can feel the floppiness creeping further each day. Sleep/stress seem to affect severity. Also, joints want to become stiff and inflexible(neck, shoulders, waist, toes, etc.) unless routinely stretched.
At least some of this sounded like a number of undiagnosed posters' experiences. Does anyone have opinions on what next steps might make sense?
Thank you
I have been told by 5 neuros, including the top 2 ALS doctors in GA, that there is NOTHING wrong with me after exams, MRIs, blood tests, 2 single-side and 1 partial EMG/NCV. It's all in my "head". That's great! But still, I am dealing with a progression where muscles all over my body seem increasingly floppy and weak, along with fascics and thinning (like the back of the shoulder muscles gone, shins now very bony, etc.). If the neuros throw you out, where do you go next? (BTW the psychiatrist sees nothing wrong on his end either, after a year of visits.) I am a male in his forties.
Here is the progression:
Early 2007: feet and lower legs were strangely still upon waking - relaxed much more than normal. Then I started waking up with hands strangely still and stiff. Then, I got the first fasciculations - in the genitalia (!) - try Googling that one :lol:
Late 2007: started taking cholesterol drugs (statins) - after 2 weeks, stiffness rapidly spread up arms and legs over a few days, and then muscles became tight all over from head to toe, like a giant rubber band. I quit taking the drugs. I have since read bad things about statins and nerves / muscles.
December 2007: Weakness started rapidly attacking all over - stomach valve to the esophagus, causing acid to pour up at night; fingers; arms; shoulders; swallowing; diaphragm. Basically, full-body muscle floppiness/weakness progression. Fasciculations and occasional muscle jerking started. Fascics seem to stay in one area for a few days, followed by weakness in that area.
Since then: sleep/good attitude returned, and I am able to function, but more and more, lifting arms, chewing, climbing, etc. seem harder. Not a full linear progression, more like - very noticeable dip, followed by improvement but not back to original levels. For example, some days the head feels like a bowling ball, then some days not noticeable. But I can feel the floppiness creeping further each day. Sleep/stress seem to affect severity. Also, joints want to become stiff and inflexible(neck, shoulders, waist, toes, etc.) unless routinely stretched.
At least some of this sounded like a number of undiagnosed posters' experiences. Does anyone have opinions on what next steps might make sense?
Thank you