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Originally Posted by seacoasthalo
What a wonderfully pleasant site this is.  Being one that has a timid personality already, it is hard for me to reach out for advice. I feel welcomed here before even posting.
I will try not to make this long. It is my fiance that is undergoing the "process of elimination" treatment. Since the neurologist has for sure said it is neurological, my fiance will hardly tell me anything on the health front.
This is how it all began....about a year and a half ago, he started with a slurred speech. He WAS (Give God all the Glory) a heavy drinker, so we blamed the speech problem on that. June of 2011 he put the beer down and has been sober ever since. Since then the speech has become worse (very nasally and extremely strained).. In August '11 he went to his GP, who in turn sent him to a ENT. All test done with ENT were clear, so off to the neuro he goes. First round of test were a MRI of the brain and blood work for MG. MRI - clean, blood work came back negative. Second trip to neuro - CAT- Scan of the chest and another round of more intense blood work. CAT-clean, blood work-neg. But, the neuro put him on mestinon to try for 4 weeks. The mestinon made the speech worse and twitching in his eyes. So off of that medicine. Third trip- EMG of left arm-dirty. Then the doctor performed a SFEMG of the forehead. It showed something, not sure what...but the doctor said it was not normal. Now the doctor wants him to start on 60mg of prednisone for 4 weeks. Finally (after two weeks dealing with insurance company) got this prescription filled. Since the last visit at the neuro, he has started with excess saliva. He will not tell me, but I hear him when he swallows and I will watch his throat muscles and you can tell he has a hard time swallowing. He is left handed and he hardly can open a pepsi can, sometimes he can not open it at all and has to use his right hand. He said the other day, he had pain in his throat but it was more skeletal than muscle pain.
He has no double vision, no fatigue in the muscles (if anything more stiffness), no droopy eye lid. The speech is not "only when tired", he wakes up with it.
My questions are: If this is MG, is it possible for the mestinon to make the MG worse? Can a person have MG and not be fatigued? Does MG effect the hands? Is the pain in the throat common?
Thank you for reading and please know ahead of time, your responses mean so much. |
1. when I start having swallowing difficulties, it always feels like a sore throat, and I know of at least one more MG patient who has a similar experience.
2. I am not a neuorlogist, but as far as I know, it is very rare for ALS to start with bulbar symptoms (eg-swallowing, speech and/or breathing difficulties) so this does not sound to me like a likely diagnosis.
3. Mestinon can make some types of MG worse, including MuSK MG. This type of MG also tends to be much less typical and many times with very little involvement of the limbs, as compared to swallowing and breathing.
4. It is a myth that you can't wake up with MG symptoms. Sleep may be disturbed and not refreshing because of swallowing or breathing difficulties, even if those are subtle. So, you in fact " work" quite hard when you sleep.
5. you can have MG with no droopy eye-lids or double vision. It can affect any or all of your skeletal muscles at any given time.
5. Prednisone can initially make MG much worse, mostly when it is given at such a high dose. It is important that his neurologist is aware of any worsening right away.
Hope this helps,
Alice