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vmd

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Dear friends, once again I am in need of your advice. The bulbar symptoms have become increasingly problematic for me recently. To add to the tongue atrophy and what I perceive to be tongue fascics, I am now noticing obvious signs of slurred speech. Sometimes when I speak I feel “tongue-tied” and especially with certain sounds. In addition, I bite my tongue periodically, when eating or talking. I have other strange tongue-related symptoms as well.

The first sign that alerted me and my doc to possible ALS was weakness on my right arm. However, after becoming aware of the possibility of ALS, I started thinking back and realized that I have had bulbar symptoms for sometime, although nothing systematic. Others with bulbar ALS have shared similar stories. I never had looked at my tongue before, so I could have atrophied and have had fascics long before I first became aware of them. I seem to be progressing fast, however. I am a teacher and if I can’t lecture, I can’t work. What do I do as I do not yet have a diagnosis? Eating is now becoming difficult because of my fear of biting the tongue. I eat slowly, because of this. I am very depressed.
 

Jamiet

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vmd,

first thing you need to do is get you some wellbutrin or zoloft or similar, thsi is what helped me......it will take a few weeks, but the right one will get you on track. ti took me 4 or 5 different meds to find the right one. lexapro made me more depressed, paxil - couldn't get out of bed, effexor made me feel like i was in space.... The right one... you aren't supposed to "feel" anything the next day or and in a few weeks, you will notice it helping your "mood".....

I have the same tongue and word and biting issues. I eat lortab..funny enough, it helps with coordination and pain in the tonge, face and back area. I don't like it, but it allows me to function better...?

Are you seeing an ALS spec... you need to call them back if you are having those problems.

take care, hang in there buddy

rgds,

Jamie
 

vmd

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Jamie, thanks. I thought about taking some medications for anxiety. I am in the process of setting up an appointment with an ALS specialist in Washington.
 

vmd

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annmarie:

Like you, I have read that many of the bulbar symptoms such as atrophy, fascics, slurred speech, trouble swallowing usually occur in a close temporal relationship. Unfortunately, one reads about individuals who do not show this pattern. This is why diagnosing this illness is so difficult.

I do know that recently my bulbar symptoms have become more pronounced and rapid in progression, so I'm certain that next time I go to the neuro, some form of mnd will be much more clear. The people with bulbar als maintain their mobility and strength longer than those with limb weakness onset, which makes sense. This would explain my situation to some extent, since I maintain good overall strength. Of course, the downside of having bulbar als is the poorer prognosis. My biggest concern with the strength issue is the muscle fatigue. My muscles tire very quickly when doing something repetitive, although my actual strength is quite high.
 

pldo

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I do not think I have the tougne fasculations but sometimes I feel as if I have dry mouth and sometimes I feel as if I have too much saliva- I am wondering if this is what they are talking about? I wish there was an easy test to say you do or do not have it.
 

vmd

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pldo;

We all pray that they will develop such a test. In addition, while waiting for a diagnosis, one also spends large amounts of money trying to get a diagnosis.
 
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