Hi, read this on another forum, was thinking if any of you have any suggestions for this poor guy here, whose dad's been suffering in the ICU for 100+ days, but yet to get a diagnosis. Apparently his dad was placed on Mestinon for a while, and all his symptoms got better, but his doctors recently took him off Mestinon and his symptoms all returned very quickly. Now he has to be put on the ventilator, and is deteriorating very quickly. Doctors there seem to think that he has ALS but from his marked improvement while on Mestinon, I would be thinking of MG, as havent really heard of ALS getting better while on Mestinon. Anything to recommend?

An excerpt from what I heard from him:
"After being intubated he was almost immediately started on Mestinon as well as prednisone to help his respiratory recovery, and over the course of about 3 and a half weeks was given larger and larger doses. We immediately saw imrovements. He could hold his head up again, and after the intubation was brought to a tracheotomy we noticed that his speech has begun returning as well. He eventually was able to speak with little slurring and more air behind his words when he had his "speak valve" on. His swallowing abilities also seemed to return (we were in the midst of testing them with different fluids and foods). Four different neuros consulted all were of the opinion that it was a myasthenic crisis which brought us into the ICU and that the subtype of myasthenia he had often required 100+ day stays in an ICU setting to wean from the ventilator and make a recovery.

Things seemed to be improving at a slow but noticeable pace.

On Monday, a new doctor began ICU rotation and said that since admission, little progress has been made. He has totally stopped the mestinon and brought in a new neurologist who has said that MG is on the bottom of his list of possible diagnoses and that ALS is more likely. Today, 2 days after the last dose of mestinon, his speech is again very difficult to understand and he is again slumped over unable to hold up his head and is again having a lot of trouble breathing. Blood samples sent out showed negative for both of the possible tests for MG. We had initially been told that there is a percentage of MG patients who show negative to both of these tests."

3 days later:
"Just returned to work from visiting my Dad at the hospital. He can no longer hold his head up without it being propped on one or both hands. When I asked him if he could hold it up at all, he said he could but "really needed to concentrate on it", and even then could only go about 5 or 10 seconds. His speech has returned to the way it was when he was admitted to the ICU. This is all after 3 days off the mestinon."

The guy seems totally helpless and just thought that some of you may be more experienced with all these. Any ideas? He's located in Canada, City: Calgary, State: AB. Anyone he can contact who's experienced in diagnosing MG?