Second Opinion
Active member
- Joined
- May 1, 2022
- Messages
- 34
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- NY
- City
- Syracuse
I am posting in this forum, as I do not go for my second opinion, until July 11th (John Hopkins).
My symptoms came on quite suddenly, and were even dismissed by my first neuro (two clean emg's, including one (April) of the tongue, in both March and April).
FInally, was seen by a thorough competent neuro.
Along with the fear of fast progression, I am worried about medications.
I was taking a multitude of vitamins and supplements, after reading they could potentially be good for ALS patients, but you can never be too sure, when it comes to google. Is it safe to take these?
I am also taking Xanax, to relieve the anxiety associated with all of this. Is this safe?
I started with body-wide fascicualtions in February, and by April have had change in speech, voice, swallowing, chewing, and trouble with air going through my nose when I speak, which burns?
I also have twitches in my face and lips.
My tongue is in a constant state of feeling as if it were burnt- normal!?
I have constant catarrh.
I wake up with a sore jaw and teeth, so I assume I am grinding them.
I am startled very easily, and cry over everything.
My swallow study was only mildly abnormal, although it feels horrendous, mostly with liquids. I often feel as if they are going to come through my nose, but thankfully have not.
My speech study was also only mildy abnormal.
My swallow study also revealed the base of my tongue was noted to have moderate erythema and edematous? Common?
Yet the rest of my tongue is pale in color.
My vocal folds were also noted as erthemya? Common?
My ears pop with every swallow, and after drinking, my throat gurgles.
I know no one can predict progression, but I am so fearful at the rate all of this came on, I will not be here much longer.
I read stories of others having one symptom for over a year, then another.
Mine came out of nowhere and came on strong. Is this normal?
I do not want take any medications that may contribute to progression (is that even possible?).
I am extremely stressed, which I am sure that is to be expected as well, but I want to do everything I can to ensure I do not contribute to a faster progression. Is stress a factor?
I feel terribly alone, and so lost.
My husband is in denial, and believes there is a mistake. Although he is supportive, he would prefer to pretend like it is not happening, and it makes for a very lonely world.
How do I move on and enjoy the moments, when I am stuck on the thought of possibly not having very many left.
Is there really life after diagnosis?
-Leslie
My symptoms came on quite suddenly, and were even dismissed by my first neuro (two clean emg's, including one (April) of the tongue, in both March and April).
FInally, was seen by a thorough competent neuro.
Along with the fear of fast progression, I am worried about medications.
I was taking a multitude of vitamins and supplements, after reading they could potentially be good for ALS patients, but you can never be too sure, when it comes to google. Is it safe to take these?
I am also taking Xanax, to relieve the anxiety associated with all of this. Is this safe?
I started with body-wide fascicualtions in February, and by April have had change in speech, voice, swallowing, chewing, and trouble with air going through my nose when I speak, which burns?
I also have twitches in my face and lips.
My tongue is in a constant state of feeling as if it were burnt- normal!?
I have constant catarrh.
I wake up with a sore jaw and teeth, so I assume I am grinding them.
I am startled very easily, and cry over everything.
My swallow study was only mildly abnormal, although it feels horrendous, mostly with liquids. I often feel as if they are going to come through my nose, but thankfully have not.
My speech study was also only mildy abnormal.
My swallow study also revealed the base of my tongue was noted to have moderate erythema and edematous? Common?
Yet the rest of my tongue is pale in color.
My vocal folds were also noted as erthemya? Common?
My ears pop with every swallow, and after drinking, my throat gurgles.
I know no one can predict progression, but I am so fearful at the rate all of this came on, I will not be here much longer.
I read stories of others having one symptom for over a year, then another.
Mine came out of nowhere and came on strong. Is this normal?
I do not want take any medications that may contribute to progression (is that even possible?).
I am extremely stressed, which I am sure that is to be expected as well, but I want to do everything I can to ensure I do not contribute to a faster progression. Is stress a factor?
I feel terribly alone, and so lost.
My husband is in denial, and believes there is a mistake. Although he is supportive, he would prefer to pretend like it is not happening, and it makes for a very lonely world.
How do I move on and enjoy the moments, when I am stuck on the thought of possibly not having very many left.
Is there really life after diagnosis?
-Leslie
Last edited: