sjh5gg
New member
- Joined
- Jan 25, 2017
- Messages
- 5
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- FL
- City
- Tampa
Hello all, thank you for your community. I have been seeking some form of diagnosis for a year or so now after beginning a variety of neuro type symptoms last Fall... which were initially numbness and tingling (I know, not ALS), which morphed into body wide twitches (worries began here)... which I have accepted now though as BFS, following a clean EMG this past March and opinion of my neuro, who is part of a large academic group. My newest set of symptoms which began in early August are in the facial and throat area, and boil down to an achy tongue after use (talking, eating) and swallowing issues which led my neuro to have me get a
modified barium swallow study last week. The findings of this were moderate dysphagia which is presenting with a Zenker's diverticulum, mainly on left side, by also on right. In my research and in talking to the doc that performed it, it seems that this can be cause by either (i) age or (ii) weakened muscles in the larynx. She actually mentioned "MND" to me as a "likely" culprit... (which of course scared the pants off of me). I understand most folks with bulbar onset ALS seem to begin with slurred speech, which I do not have, and my neuro seems to completely disagree with the speech doc's statement regarding "possible MND", given that I had a second EMG only 4 weeks back, including a needle through the neck to tongue, which came out fine, along with a clinical exam last week of the bulbar area which was also fine. Any suggestions or thoughts would be greatly appreciated, this is all extremely confusing to me. Is it possible/have we heard of cases of bulbar ALS beginning in one so very small muscle space like the pharynx? I am just scared to death of waking up one day and no longer being able to swallow... Thank you so much for your time,
modified barium swallow study last week. The findings of this were moderate dysphagia which is presenting with a Zenker's diverticulum, mainly on left side, by also on right. In my research and in talking to the doc that performed it, it seems that this can be cause by either (i) age or (ii) weakened muscles in the larynx. She actually mentioned "MND" to me as a "likely" culprit... (which of course scared the pants off of me). I understand most folks with bulbar onset ALS seem to begin with slurred speech, which I do not have, and my neuro seems to completely disagree with the speech doc's statement regarding "possible MND", given that I had a second EMG only 4 weeks back, including a needle through the neck to tongue, which came out fine, along with a clinical exam last week of the bulbar area which was also fine. Any suggestions or thoughts would be greatly appreciated, this is all extremely confusing to me. Is it possible/have we heard of cases of bulbar ALS beginning in one so very small muscle space like the pharynx? I am just scared to death of waking up one day and no longer being able to swallow... Thank you so much for your time,