Hello Everyone-
I thought I would come to give everyone an update since I have had a few appointments over the last week and haven’t posted in a while. Here it is-
I saw my ENT, he seems very concerned. He said that the soreness I feel along the jaw line is probably tongue weakness. He noted some "bowing" in my vocal cord and noted fasics in my tongue. In Feb., he noted some vocal fold atrophy. He said he thought it was non-progressive. I asked him why he thought this since he didn’t have a baseline to go off of and he said that if it were progressive, I would have talking, speech, and swallow issues showing by now. He said he strongly thinks I need a muscle biopsy but said he would make a note the file and let my neuro schedule it. End of the ENT visit.
Two days later, I had my neuro visit. Clinical exam was normal (reflexes and strength tests) It was frustrating because of the following. MY last EMG was in Dec and didn’t include my tongue or bulbar region. I told him I wanted another EMG in June (6 months after my last one). He fought me like crazy on getting the EMG. Even with the new symptom of vocal fold atrophy that appeared in Feb found by ENT.
I reminded him I have had global muscle twitching since last August. I told him I read that if you have global twitching, and it is from ALS, then the EMG will certainly show dirty at that point. He said that this is true. Then two seconds later he told me that he doesn’t want to do an EMG yet bc it might be too soon to show ALS? Also-In Dec when my EMG was normal, he told me I don’t have ALS bc the EMG is clean (why was it not to soon then but is now?)(major contradictions). I basically told him I wanted the EMG and was not going to take NO for an answer. He also hasnt taken notes during my last 2 visits, so I don’t understand how he can keep track of my progress?
My neuro insists that since I can lift my arms over my head, and had a clean EMG 6 months ago, that he doesn’t think that I have ALS and then he says stuff like "well, sometimes it is just to soon to tell" but then say " I really really don’t think you have ALS". He also didn’t want to do a muscle biopsy yet. Even though my ENT strongly recommended a muscle biopsy, my neuro doesn’t want to do it yet because he thinks once again it may be "to soon"
I have had symptoms for 14 months and really probably 24-28 months because when I think back the fatigue and back soreness goes back that long. I have had muscle twitching for 7 months. At this point, if this was MND/ALS, it would show in a muscle biopsy, correct?
Does anyone know anything that could cause atrophy, muscle twitching, dry eyes at night, extreme muscle soreness, muscle knots, and fatigue that wouldn’t show on an EMG? Is there any chance that it is to soon and am I being unreasonable to want another EMG since I have had new major developments in the last 6 months? What about the muscle biopsy..should I push for this or wait until the end of the year like my neuro suggests?
Thank-you for your continued support!
CB1977
I thought I would come to give everyone an update since I have had a few appointments over the last week and haven’t posted in a while. Here it is-
I saw my ENT, he seems very concerned. He said that the soreness I feel along the jaw line is probably tongue weakness. He noted some "bowing" in my vocal cord and noted fasics in my tongue. In Feb., he noted some vocal fold atrophy. He said he thought it was non-progressive. I asked him why he thought this since he didn’t have a baseline to go off of and he said that if it were progressive, I would have talking, speech, and swallow issues showing by now. He said he strongly thinks I need a muscle biopsy but said he would make a note the file and let my neuro schedule it. End of the ENT visit.
Two days later, I had my neuro visit. Clinical exam was normal (reflexes and strength tests) It was frustrating because of the following. MY last EMG was in Dec and didn’t include my tongue or bulbar region. I told him I wanted another EMG in June (6 months after my last one). He fought me like crazy on getting the EMG. Even with the new symptom of vocal fold atrophy that appeared in Feb found by ENT.
I reminded him I have had global muscle twitching since last August. I told him I read that if you have global twitching, and it is from ALS, then the EMG will certainly show dirty at that point. He said that this is true. Then two seconds later he told me that he doesn’t want to do an EMG yet bc it might be too soon to show ALS? Also-In Dec when my EMG was normal, he told me I don’t have ALS bc the EMG is clean (why was it not to soon then but is now?)(major contradictions). I basically told him I wanted the EMG and was not going to take NO for an answer. He also hasnt taken notes during my last 2 visits, so I don’t understand how he can keep track of my progress?
My neuro insists that since I can lift my arms over my head, and had a clean EMG 6 months ago, that he doesn’t think that I have ALS and then he says stuff like "well, sometimes it is just to soon to tell" but then say " I really really don’t think you have ALS". He also didn’t want to do a muscle biopsy yet. Even though my ENT strongly recommended a muscle biopsy, my neuro doesn’t want to do it yet because he thinks once again it may be "to soon"
I have had symptoms for 14 months and really probably 24-28 months because when I think back the fatigue and back soreness goes back that long. I have had muscle twitching for 7 months. At this point, if this was MND/ALS, it would show in a muscle biopsy, correct?
Does anyone know anything that could cause atrophy, muscle twitching, dry eyes at night, extreme muscle soreness, muscle knots, and fatigue that wouldn’t show on an EMG? Is there any chance that it is to soon and am I being unreasonable to want another EMG since I have had new major developments in the last 6 months? What about the muscle biopsy..should I push for this or wait until the end of the year like my neuro suggests?
Thank-you for your continued support!
CB1977
) I am convinced the EMG neuro was no good (he is supposed to be an expert), that the machine was broken, that he didn't do the right side of my body, etc. etc. etc. What harm will it do to have the second EMG if it will bring you peace of mind? We hear on this forum doctors who do that for their worried undiagnosed....
