Where I stand today...

[lhagsjr]

OK, so here goes. Keep in mind my first "twitch" was in October. i sent a fax to my ALS doc today. In the fax I basically said my physical exam was pretty much normal but not 100%, I had brisk reflexes but without increased tone, does anyone know what this means?), my EMG was slightly abnormal as well(no fibs, PSW's, or fasics which I think are almost always seen in ALS) but did have increased insertational activity in about 4 muscles. And finally my biopsy which showed "scattered" atrophic fibers but no signs of degeneration or regeneration or grouping which are all the signs of ALS I believe. The fax basically said the bottom line is all 3 tests showed abnormalities even if they werent catostrophic. I said the last time u examined me was May 15th, I would like another physical exam before closing the door at this point. The reason is this, my main problem is atrophy. I have it in my shoulders, upper arms, and quadriceps. It is very noticeable to me. The twitching, my other symptom, has actually lightened up a little which is odd to me. I still twitch a couple of times a day for about 30 secs but I could live with this without the atrophy. My 3rd symptom is the popping and cracking of my shoulders which is questionable if its a symptom. I told him I would just like him to examine me one more time, which i was going to have him to when I went to get my biopsy results but he ended up just calling me with the results. Of course no phone call today.
In the meantime, I going to try and I mean try to move on a little bit. Im going to physical therapy for my shoulders. I already had an MRI of my right shoulder a few weeks ago which claimed tendopathy and bursitis. Would it mention muscle atrophy of the shoulder muscles if there was some? So Im going to try to rehabilitate my shoulders which I think will tell a lot. If they dont get better I know there is something neuromuscularly wrong if a 28 year old cant get stronger with PT. Im also going to try to eat better and lose get stronger. Right now Im going with BFS and atrophy do to disuse(I have been really inactive in the last year, I had "2 other medical issues before this") Do I necessarily believe this? no not really. But a TOP ALS doc, a doc who is the medical director of an ALS clinic of which there are only 19 in the country and director of an EMG lab says absolutely NO ALS and "he doesnt think" anything is wrong neuromuscularly. I have tried going to the doctors, I have tried everything medically. Im going to try to rehabilitate my body and go with BFS. Only time will tell if I can make myself better....

 

[lhagsjr]

MY ALS doc...

http://pennhealth.com/WagForm/MainPage.aspx?config=provider&P=PP&ID=1433

 

[brooksea]

Good luck, keep your head up!

Let us know your progress, as this could be helpful to others.

I hope the rehabilitation does the trick.

 

[patricia1]

OK, so here goes. Keep in mind my first "twitch" was in October. i sent a fax to my ALS doc today. In the fax I basically said my physical exam was pretty much normal but not 100%, I had brisk reflexes but without increased tone, does anyone know what this means?), my EMG was slightly abnormal as well(no fibs, PSW's, or fasics which I think are almost always seen in ALS) but did have increased insertational activity in about 4 muscles. And finally my biopsy which showed "scattered" atrophic fibers but no signs of degeneration or regeneration or grouping which are all the signs of ALS I believe. The fax basically said the bottom line is all 3 tests showed abnormalities even if they werent catostrophic. I said the last time u examined me was May 15th, I would like another physical exam before closing the door at this point. The reason is this, my main problem is atrophy. I have it in my shoulders, upper arms, and quadriceps. It is very noticeable to me. The twitching, my other symptom, has actually lightened up a little which is odd to me. I still twitch a couple of times a day for about 30 secs but I could live with this without the atrophy. My 3rd symptom is the popping and cracking of my shoulders which is questionable if its a symptom. I told him I would just like him to examine me one more time, which i was going to have him to when I went to get my biopsy results but he ended up just calling me with the results. Of course no phone call today.
In the meantime, I going to try and I mean try to move on a little bit. Im going to physical therapy for my shoulders. I already had an MRI of my right shoulder a few weeks ago which claimed tendopathy and bursitis. Would it mention muscle atrophy of the shoulder muscles if there was some? So Im going to try to rehabilitate my shoulders which I think will tell a lot. If they dont get better I know there is something neuromuscularly wrong if a 28 year old cant get stronger with PT. Im also going to try to eat better and lose get stronger. Right now Im going with BFS and atrophy do to disuse(I have been really inactive in the last year, I had "2 other medical issues before this") Do I necessarily believe this? no not really. But a TOP ALS doc, a doc who is the medical director of an ALS clinic of which there are only 19 in the country and director of an EMG lab says absolutely NO ALS and "he doesnt think" anything is wrong neuromuscularly. I have tried going to the doctors, I have tried everything medically. Im going to try to rehabilitate my body and go with BFS. Only time will tell if I can make myself better....

I have the same thing Popping and clicking from my shoulders and horrible pain when i moved my shoulders and I cant get my arms up I went for PT With No improvement So I guess Its the ALS.PAt