Hey! For all of you who have been wondering what happened to this man, heres an update from his son. I was also anxiously awaiting news. Finally got it on 2nd sept.

Pasted the whole lot of it so that I don't miss anything out. =)

*****

My dad has been in the ICU for 102 days now, still without any clear diagnosis. We have been given MG three times, ALS twice, and very vague dxs without even a name twice. We have been told both that there is absolutely no potential for improvement and that what my father has is genotype of ALS which mostly attacks the respiratory system and when most people afflicted with it die they retain most of their ability to move their legs and arms, and the actual cause of death is respiratory failure or a respiratory infection.

We have good days where he seems to be generally improving and gradually getting stronger and we have days where he is completely bedridden. There have been 7 neurologists and COUNTLESS other doctors giving their opinions on this and no one really agrees. We have been preparing for the worst though...

My dad has been trach cradling for 16-18 hours a day now and some doctors have said he is totally ready to get off the ventilator completely and others say that he never will. We keep having setbacks (pnemonea twice, many UTI's,) and so we will begin to see deterioration which would be characteristic with a MND but then it seems to reverse once the infections are discovered and treated... At the begining of last week he was walking a few hundred meters twice a day every day, and going to the hospital gym each day for about 30 minutes. This week he cant really even walk more than about 5-10 meters. Do yout think a deterioration in a MDN could come on so quickly?

A lot of the confusion and uncertainty is the question of have we seen any improvements over this 100 days. It is hard to tell for me because I see him twice a day, every day! There was a plan to transition him onto using a bipap at night and a little bit during the day so he could at least come home and live the last of his life out at home where he would be happiest.

My main question is... the symptoms he had seemed to come on quite suddenly... everything kind of happened from December-April, and he was admitted to the ICU in May. With such a rapid progression occuring for the first five months, why would things have (at the very least) stabilized for the past three months? And I think there has been some gradual but very clear improvments since admission. One respirologist told my family that the improvment we are seeing is because of proper nutrition and being on the ventilator part time each day. I could totally accept that if the improvment was just for the first few weeks of admission but it has been going on up until this week. We have had no marked deterioration aside from when he is sick with something else on top of whatever this is... Could it be because of the general care he is getting in hospital?

***

It drives me crazy when I read of whats happening. If only I could b there to scream at the docs.

Thanks for the update Connie :-)

Oh my goodness, I'm speechless.
I really don't understand how this sort of thing can happen in this day and age.(well no maybe I do :-( )
And why oh why arn't the drs talking, instead of telling the family different things.
Grrrrrr, I'm sooooo frustrated

Thanks Connie, That's just inconcievable. I can't understand why they don't have a patient advicate not affiliated with the hospital. I wonder if they were able to bring the Dr. back that thought he had MG? He seems liked their best hope. Such a damn shame. I will keep that poor man and his family in my prayers.

Pat

I'm not sure with the medical systems over there, but sometimes there are just some black sheeps clothed in the doctors robe. Lol. I guess we get that everywhere.

Frankly speaking, I don't know if the family has tried getting back the first doc, though I'd like to think that they did but somehow failed. I also do hope the son has time to come and visit this site.

To ConnieS...the O.P. of this thread...

Did you ever find out what happened to this gentleman?

Lydia

Hey, no there wasn't an update again. He didn't reply to any message and till now sometimes I still wonder what happened. Just kills me sometimes when they post n forget about it. :/

ConnieS, It occurred to me that it seems wrong that no mestinon is a final word as there is proof it helps. My mind started to go and if it were my mom I would see if the regular doc meaning his GP or pcp however you consider it could exert pressure to restart it.

I did see somewhere that mestinon worked/ was used for ALS tho it wasnt something I found readily. If I can find it I will post it here. I have to say that I would be going to a hospital big shot and sitting on him till his got my dad the mestinon.

Annie59

OPPS, eyes and brain really off today. Just noticed this was from older post and there is not contact at this point. tried to cancel but failed.
Annie59

Hi Annie,

I once took Mestinon for a while, it gave me slightly more energy but it I still progressed. The energy it gave was kinda short lived. Lol.... I remember when I took the Tensilon test, my symptoms improved, for a short while. i was on a high and kept laughing. Other than that, spasticity n everything remained.