Mdcastle
New member
- Joined
- Mar 22, 2015
- Messages
- 5
- Reason
- Other
- Country
- US
- State
- MN
- City
- Bloomington
Looks like my previous thread was locked, I thought I'd update.
Cervical MRI found some mild to moderate herniations, stenosis, and on C6-C7, "disc osteophyte complex" on right. Spine doctor thought this could explain my worse weakness in my right arm that the neuro noted, sent me to physical therapy.
Physical therapist noticed tightness in my upper back, bilateral measurable fatiguable weakness in my grip strength (declining about 50% over three attempts), but seemed to be grasping at straws and while giving me some excercises to do) , thought I had a "neurological issue" I messaged the neuro I saw, and he offered me another appointment coming up this week.
Since my first post, my overall condition seems to have gotten worse, basically every muscle will shake if stretched or held against gravity. I'm having a difficult time typing because of the "weakness" and clumsiness in my fingers, and typing is my job. The lump in my throat has resolved, though. But I can still ride a bicycle and can't point out any specific thing that just doesn't work. I have noticed shortness of breath when laying down after a big meal.
Talking is getting harder to make words come out OK, but I can say them if I make a second attempt, others continue to deny any changes in what I sound like. Tongue looks (to me) like it's getting atrophied, but not to others, a lot of time it feels twitchy / buzzy / burning. I've looked and I don't see any movement aside from an occasional twitch on the end. My parents say that tongues get more assymetrical and uneven as you get older so mine has probably been that way for a while, and I shouldn't be looking at pictures online.
*What would happen if I just presented at an ER demanding they find what's wrong with me once an for all. I am really tired of getting bounced around from doctor to doctor while continuing to deteriorate.
*So what should I say at my neuro appointment to try to get answers without sounding like an anxious hypochondriac (even if I am?). I'm not sure if he sill doesn't order an EMG if I should accept that, or demand that he order one. My parents are of the mind that you can put absolute trust in what doctors do, and if he even thought there was the slightest chance I had ALS he would have ordered further investigation the first time, and that although not a neuro-muscular specialist he should have the experience to know.
*My parents think I have CIDP (when not telling me my problems are all in my head). Without trying to diagnose me, does this even sound like a possibility, it seems like the symptoms come on a lot faster than ALS typically does which would be my case, I even read that anxiety can in fact provoke autoimmune disorders!
Thanks for any insights!
Cervical MRI found some mild to moderate herniations, stenosis, and on C6-C7, "disc osteophyte complex" on right. Spine doctor thought this could explain my worse weakness in my right arm that the neuro noted, sent me to physical therapy.
Physical therapist noticed tightness in my upper back, bilateral measurable fatiguable weakness in my grip strength (declining about 50% over three attempts), but seemed to be grasping at straws and while giving me some excercises to do) , thought I had a "neurological issue" I messaged the neuro I saw, and he offered me another appointment coming up this week.
Since my first post, my overall condition seems to have gotten worse, basically every muscle will shake if stretched or held against gravity. I'm having a difficult time typing because of the "weakness" and clumsiness in my fingers, and typing is my job. The lump in my throat has resolved, though. But I can still ride a bicycle and can't point out any specific thing that just doesn't work. I have noticed shortness of breath when laying down after a big meal.
Talking is getting harder to make words come out OK, but I can say them if I make a second attempt, others continue to deny any changes in what I sound like. Tongue looks (to me) like it's getting atrophied, but not to others, a lot of time it feels twitchy / buzzy / burning. I've looked and I don't see any movement aside from an occasional twitch on the end. My parents say that tongues get more assymetrical and uneven as you get older so mine has probably been that way for a while, and I shouldn't be looking at pictures online.
*What would happen if I just presented at an ER demanding they find what's wrong with me once an for all. I am really tired of getting bounced around from doctor to doctor while continuing to deteriorate.
*So what should I say at my neuro appointment to try to get answers without sounding like an anxious hypochondriac (even if I am?). I'm not sure if he sill doesn't order an EMG if I should accept that, or demand that he order one. My parents are of the mind that you can put absolute trust in what doctors do, and if he even thought there was the slightest chance I had ALS he would have ordered further investigation the first time, and that although not a neuro-muscular specialist he should have the experience to know.
*My parents think I have CIDP (when not telling me my problems are all in my head). Without trying to diagnose me, does this even sound like a possibility, it seems like the symptoms come on a lot faster than ALS typically does which would be my case, I even read that anxiety can in fact provoke autoimmune disorders!
Thanks for any insights!