Your response means so much
 

It was suggested in the MG forum to repost over here. If any of you have suggestion, I am so appreciative to hear them.



Join Date: Jan 2012
Posts: 2

Your response means so much
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.

Hopefully the prednisone will work. It is very frightening and a very long process to work up neurological disorders of this nature. I was recent changed from motor neuropathy to NMD. I love this forum, but thank G_d this section is not heavily used. May I suggest you look into http://www.alsforums.com/forum/index.php for more information. I sure hope I am not breaking any rules...I love Neurotalk and do not wish to get in trouble here.

Thank you!! That forum is where I have done some long hours of reading and "research" on. There are so very many people going on there that seem to "want" ALS, so I was afraid to post there...did not want anyone to think I want ANYONE to have this. I may get the nerve up soon, though!!

I agree, this is a wonderful forum and the people here are so friendly!!