Hi Forum Friends,
I was tried to update to a previous thread I posted (https://www.alsforums.com/forum/do-i-have-als-als/26657-looking-advice-guidance-thank-you.html) but it is closed now.
I thought I was making progress in getting a diagnosed but am back to hitting a wall or at least a waiting game. Set myself up with a great PCP at UPMC in Pittsburgh who was concerned and recommended getting a general neurology appt within the university system and then getting a referral to a specialist from there. I had a bunch of bloodwork done for every auto-immune disease imaginable, all negative. My neuro test was rather brief and I can still walk on toes, heels, etc. Also had an EMG performed by a resident that simply said "normal" when it came back, but didn't get any info other than that. Maybe I should request a full report? I was a little disappointed that the test was done by a resident and not experienced doc given my symptoms. During my initial neuro appt, the doctor said if all the blood tests came back negative he would talk to docs within the neuromuscular unit and get me set up there. I got a call back this week that the earliest appointment is March. Yikes. Is this just how the system works?
Anyway, within the past month, the progression of whatever this is has been rapid. When I moved my left foot up and down previously, it was and still is making a rather rigid movement, not fluid at all. Is this attributed to weakness? I now have developed this same rigid movement in my shoulders and arms/hands as well as abdomen when trying to sit up. Tasks such as pulling up my pants, pulling sheets off a bed, or reaching for something on a night stand are getting difficult to do. Mouth issues have increased, especially jaw soreness and tongue feeling weird. Twitching has been pretty constant in all limbs, torso, even face. I've had random twitching every now and then for the past year but never thought much of it, we all twitch at one point or another. However, since July, it's been pretty non stop, and I'm only now alarmed because I'm now experiencing motor problems. I have dents and dimples in clumps in many areas but just thought that was some weird type of fat storage, now I'm thinking it might be atrophy, those areas tend to shake or quiver when I move the muscles there. I've inserted several pics below of a some spots I'm having problems with...I have other spots on my back and upper arms but am not so good at getting pics of those. I apologize in for the hugeness of these pics and well as the strange orientation.
IMG]http://i59.tinypic.com/ojiiqh.jpg[/IMG]
I don't think I can wait 5 more months until March given the rate of progression I've experienced in the past few months. Back in June I was biking up to 40 miles in a day and now I'm struggling to turn over in bed. I know some people on here have experience with diseases similar to ALS, maybe looking for feedback there, or does this look like ALS and I should I go straight to an ALS center or MND specialist? I realize that it would be quite widespread for ALS, however is it possible that I've been shrugging off a bunch of things for the past year/two as aging and now it has spread? Only asking because I am at a loss of what to do, at least what won't involve waiting 6 months for a consult. I had to take a leave from work because it is pretty labor intensive and I couldn't keep up so I'd like to figure this out before it gets too bad and I'm not at all prepared. I have been living between NYC and Pittsburgh over the last month, so if anyone knows any good docs in either of those areas, please let me know.
Any feedback is always appreciated, thank you.
I was tried to update to a previous thread I posted (https://www.alsforums.com/forum/do-i-have-als-als/26657-looking-advice-guidance-thank-you.html) but it is closed now.
I thought I was making progress in getting a diagnosed but am back to hitting a wall or at least a waiting game. Set myself up with a great PCP at UPMC in Pittsburgh who was concerned and recommended getting a general neurology appt within the university system and then getting a referral to a specialist from there. I had a bunch of bloodwork done for every auto-immune disease imaginable, all negative. My neuro test was rather brief and I can still walk on toes, heels, etc. Also had an EMG performed by a resident that simply said "normal" when it came back, but didn't get any info other than that. Maybe I should request a full report? I was a little disappointed that the test was done by a resident and not experienced doc given my symptoms. During my initial neuro appt, the doctor said if all the blood tests came back negative he would talk to docs within the neuromuscular unit and get me set up there. I got a call back this week that the earliest appointment is March. Yikes. Is this just how the system works?
Anyway, within the past month, the progression of whatever this is has been rapid. When I moved my left foot up and down previously, it was and still is making a rather rigid movement, not fluid at all. Is this attributed to weakness? I now have developed this same rigid movement in my shoulders and arms/hands as well as abdomen when trying to sit up. Tasks such as pulling up my pants, pulling sheets off a bed, or reaching for something on a night stand are getting difficult to do. Mouth issues have increased, especially jaw soreness and tongue feeling weird. Twitching has been pretty constant in all limbs, torso, even face. I've had random twitching every now and then for the past year but never thought much of it, we all twitch at one point or another. However, since July, it's been pretty non stop, and I'm only now alarmed because I'm now experiencing motor problems. I have dents and dimples in clumps in many areas but just thought that was some weird type of fat storage, now I'm thinking it might be atrophy, those areas tend to shake or quiver when I move the muscles there. I've inserted several pics below of a some spots I'm having problems with...I have other spots on my back and upper arms but am not so good at getting pics of those. I apologize in for the hugeness of these pics and well as the strange orientation.
IMG]http://i59.tinypic.com/ojiiqh.jpg[/IMG]
I don't think I can wait 5 more months until March given the rate of progression I've experienced in the past few months. Back in June I was biking up to 40 miles in a day and now I'm struggling to turn over in bed. I know some people on here have experience with diseases similar to ALS, maybe looking for feedback there, or does this look like ALS and I should I go straight to an ALS center or MND specialist? I realize that it would be quite widespread for ALS, however is it possible that I've been shrugging off a bunch of things for the past year/two as aging and now it has spread? Only asking because I am at a loss of what to do, at least what won't involve waiting 6 months for a consult. I had to take a leave from work because it is pretty labor intensive and I couldn't keep up so I'd like to figure this out before it gets too bad and I'm not at all prepared. I have been living between NYC and Pittsburgh over the last month, so if anyone knows any good docs in either of those areas, please let me know.
Any feedback is always appreciated, thank you.