LukeL
Active member
- Joined
- Aug 10, 2014
- Messages
- 44
- Reason
- Learn about ALS
- Country
- US
- State
- Texas
- City
- Houston
I know I started at thread back in August regarding my rather sudden onset of symptoms and a questionable EMG. As promised, I waited until my appt with Dr. Appel to return to the forum rather than unnecessarily pepper each of you with questions that you obviously can't answer.
So I figured I would give you guys who were kind enough to follow and participate in my thread a quick update.
After Appel met with me the first day (of the 3-day appt), they cancelled the rest of my appts for the week. Dr. Appel said that "I don't have ALS" because I don't "meet the necessary diagnostic criteria." He also said he doesn't know what is causing my issues, but there is no way he can diagnose me at this point with ALS (mainly b/c of my strength and initial EMG in August) He said, "Could it be early ALS? Yes...Is it? Not right now." No additional EMG was performed to see if I had additional denervation in other parts of my body (beyond my right arm). I assume he felt it was too soon to conduct another. One area involvement does not meet the parameters for a definitive diagnosis.
He's just not trying to figure out what it is, which makes me think he feels that it's likely ALS but would rather not say anything unless it's definitive...which is typical of this terrible process of elimination. He gave me an arbitrary diagnosis of "cervical radiculopathy" because they can't pinpoint the real underlying problem. It's important to note that one of the best neurosurgeon's in Houston said I do not need surgery and referred me to the Baylor ALS specialist. I chose to see Dr. Appel instead.
Since I last posted on this forum, my symptoms have progressed. My twitching has continued unabated in my upper arms and has moved into my forearms a bit. I cramp in my upper body when my muscles are engaged (then they release and fasciculate)...weird phenomenon. My twitching is pretty much everywhere now, but I'm grateful that I have experienced no additional weakness. I'm not sure what the "typical" timeline for a person with ALS is between fasics and weakness. My presentation seems odd.
Dr. Appel started his commentary (before my neuro exam) by telling me that he "doesn't like telling people this and especially people my age." I thought he was going to tell me I had ALS, but then he went off on a tangent about me trying to figure out what is going on rather than living my life. Kept saying he was more worried about me psychologically than physically. Kind of a mind f$&@. Anyway, now I just sit and wait to see if my symptoms progress, stabilize or resolve. Reevaluate in 6 months or sooner, if necessary. (EMG, neuro exam, etc.) Fun stuff!
So I figured I would give you guys who were kind enough to follow and participate in my thread a quick update.
After Appel met with me the first day (of the 3-day appt), they cancelled the rest of my appts for the week. Dr. Appel said that "I don't have ALS" because I don't "meet the necessary diagnostic criteria." He also said he doesn't know what is causing my issues, but there is no way he can diagnose me at this point with ALS (mainly b/c of my strength and initial EMG in August) He said, "Could it be early ALS? Yes...Is it? Not right now." No additional EMG was performed to see if I had additional denervation in other parts of my body (beyond my right arm). I assume he felt it was too soon to conduct another. One area involvement does not meet the parameters for a definitive diagnosis.
He's just not trying to figure out what it is, which makes me think he feels that it's likely ALS but would rather not say anything unless it's definitive...which is typical of this terrible process of elimination. He gave me an arbitrary diagnosis of "cervical radiculopathy" because they can't pinpoint the real underlying problem. It's important to note that one of the best neurosurgeon's in Houston said I do not need surgery and referred me to the Baylor ALS specialist. I chose to see Dr. Appel instead.
Since I last posted on this forum, my symptoms have progressed. My twitching has continued unabated in my upper arms and has moved into my forearms a bit. I cramp in my upper body when my muscles are engaged (then they release and fasciculate)...weird phenomenon. My twitching is pretty much everywhere now, but I'm grateful that I have experienced no additional weakness. I'm not sure what the "typical" timeline for a person with ALS is between fasics and weakness. My presentation seems odd.
Dr. Appel started his commentary (before my neuro exam) by telling me that he "doesn't like telling people this and especially people my age." I thought he was going to tell me I had ALS, but then he went off on a tangent about me trying to figure out what is going on rather than living my life. Kept saying he was more worried about me psychologically than physically. Kind of a mind f$&@. Anyway, now I just sit and wait to see if my symptoms progress, stabilize or resolve. Reevaluate in 6 months or sooner, if necessary. (EMG, neuro exam, etc.) Fun stuff!