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holly1

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I have been diagnosed with low B12; it is 167. However, I am still having neurological and bulbar symptoms even after 2 injections. I will give this a little time before further testing. My fatigue has gone thank goodness, but my twitches are still there. As of now, I have no slurring of words, no trouble swallowing, but I do have a twitching tongue as well as elsewhere:roll:, jaw jerk reflex, (both of these are on and off) and liquid sometimes runs out of the side of my mouth, as well as drooling during the night, but not during the day. I still believe I have bulbar ALS, but as I said will give this some time as there is nothing they can do anyway and I am 70.

holly

:roll:
 
Without slurring words or having trouble swallowing I would not be worrying about ALS. Congratulations!
 
I agree with Joel, no slurring words or swallowing problems (in that order) means that it doesn't sound like bulbar to me.
 
I have been diagnosed with low B12; it is 167. However, I am still having neurological and bulbar symptoms even after 2 injections. I will give this a little time before further testing. My fatigue has gone thank goodness, but my twitches are still there. As of now, I have no slurring of words, no trouble swallowing, but I do have a twitching tongue as well as elsewhere:roll:, jaw jerk reflex, (both of these are on and off) and liquid sometimes runs out of the side of my mouth, as well as drooling during the night, but not during the day. I still believe I have bulbar ALS, but as I said will give this some time as there is nothing they can do anyway and I am 70.

holly

:roll:

Holly, my tongue has been twitching all day (as well as my calves and back) and my arm is abnormally weak after carrying a small bag of groceries around for a few minutes. But as long as I can talk, walk and carry that bag, I'm gonna assume it's not ALS. Please try and adopt a similar attitude, life will be so much better without as much anxiety.

Something may be wrong, but don't assume "something" is ALS.
 
. ... As of now, I have no slurring of words, no trouble swallowing... I still believe I have bulbar ALS, but as I said will give this some time as there is nothing they can do anyway and I am 70.

holly

:roll:

Holly,

Putting aside the finding that you have low B12, and (presumably?) negative/clean EMG testing, here is something to keep in mind: The very definition of palsy, as in bulbar palsy, is weakness. Palsy means weakness, and bulbar refers to the area the weakness manifests itself.

If you don't have weakness in this area, and I do not remember you mentioning it if you do, then this alone is a reason why you should believe your doctors, and others who have taken the time to respond to your update.

There is a member (Planningguy) here who also has low B12, although he does not post very often anymore, you could perhaps send him a message about this, as he may be able to give you some feedback as to how long it took him to see some improvements from the injections.

Good luck to you.
 
We traveled to Tennessee to see my son and his family this weekend and my 14 year old grandson noticed that I was saying bear wrong. I also have felt really shaky while here and noticed that when eating a sandwhich that I no longer can get the bread off the roof of my mouth with my tongue. I keep biting my tongue also. So, I guess it is back to the doctor as I am starting to progress more with bulbar. I also, while here, went to step in the car and got the worse charley horse I have ever had, after 2 days I am still feeling the effects. I have had many smaller ones, but this one was a doozy.

Thanks for all you help,

Holly
 
hi holly.
just wondering if bulbar onset pls could be a possibility.
you mentioned you have had hyper jaw reflex but as rose said clean emg.
from leg onset i now have bulbar problems,i do have slurred speech when tired and can occasionally choke.
my son very ofton picks up on words that dont come out right.............much to my annoyance.
give the injections a bit longer to work but if things dont improve then definatly see your neuro again.
if you do see him and he checks your jaw finding it hyper that is definatly umn.
take good care.caroline
 
Holly,
My onset with bulbar PLS was in 2004, Dx in 2006. It did not start with slurring. It started with the throat closing up and speaking nasally. From there it went to not being able to pronounce certain letters, like the “K” and “P”. Then it went to the slurring. I did not have swallowing problems until 2006. Drooling started around 2008. My B-12 level was fine.
Has your neuro run tests for Myasthenia gravis?

Judith
 
I am sorry if someone misunderstood me as I have not been to a neurologist, just a neruo surgeon and no emg. My family doctor ran the blood work and found the low B12. I have been dealing with many symptoms for the last year and a half and had many tests and now think some of those symptoms were the low B12. My family doctor sees me every 2 to 3 weeks and I definetly will keep bringing up these symptoms if they continue.

Thank you all for all your input.

Holly
 
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