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Distinguished member
Feb 19, 2007
North East
We are waiting to go to the ALS clinic hopefully will know more then. Since this is so hard to DX what else falls in to guess? We have had stroke, MD, myasthenia gravis and now ALS. If it is it is bulbar onset with now only the some speaking and some swallowing problems and it is being slow to progress according to some things I have read. Thankful in one way wondering what in another. It has been 18 months to 2yrs since some onset.
It sounds like you have good doctors because they've hit the high points and seem to be taking things in order. With isolated bulbar weakness there are not a whole lot of possibilities (unlike limb onset). After stroke, MG and a brain tumor have been ruled out, ALS is the most likely possibility. That doesn't mean you have it but if you don't you may be looking at a very strange presentation of a rare illness--say a metabolic problem or maybe multifocal motor neuropathy. I'm sure there are other possibilities that I don't know about.
They did a brain scan I think to rule out the tumor. I guess the waiting to see is as hard as knowing and not sure what and when things will change. From all I read online I am not thinking they are wrong just hoping Maybe there is something else.
As of today we now know it is ALS. We thought it was bulbar onset because we saw the speech and swallowing but had problems with his shoulder a while ago The doctor today thought it was limb onset because to that. So we will be it touch with y'all.
Sorry about the diagnosis Georgia. We were all hoping it would be something else. Ask questions when you need to.
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