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Myasthenia Gravis age 21

(4 Posts)
Mrsnomiddlename Sun 20-Nov-16 13:02:29

Hi - my 21 yr old son has just been diagnosed with this and is still in hospital, very poorly but slowly recovering. It's so rare I can't find any details on another case of someone his age suddenly getting it without any previous symptoms at all. It's affected the muscles in his face and throat only, unable to speak and eat properly, still on liquids and purees only in hosp. I've been to hell and back and could do with some positive stories ... he just graduated as an actor and was waiting to launch himself on the world stage. Have contacted MyAware who seem to offer a fair bit of info. Thanks for any words of encouragement ...

hairymuffet Sun 20-Nov-16 15:22:04

He will be fine, it's a long haul though. The meds take a long, long time to kick in and get stabilised.
He may be fine on the meds in the long term, but may require iv immunoglobulin therapy or plasmaphoresis to maintain his condition. The main problem will be fatigue, but there is no reason to think that he shouldn't get back to work. He needs to be under a neurologist who specialises in mg. There may also be a specialist nurse who you can contact. Where are you ??

Mrsnomiddlename Sun 20-Nov-16 16:18:55

Oh thanks Hairymuffet- I thought that might be the case, progress so far is very slow but at least it is progress. He's under a neurologist in hospital in NW London at the moment as he was staying with my brother there, but once he's well enough to be discharged he'll be returning to us at home in Lancashire near Blackpool/Preston. Still not sure whether to ultimately transfer his care up here or keep him linked to to the London hospital as they've seen him at his worst and know how he progresses and responds to meds. Of course being treated locally to us would be more convenient as he'll be living with us for the foreseeable future until we all get a handle on this. Don't know how to find out what the MG knowledge up here is (it might be better or worse than in London). Would so love access to a MG Nurse, how do I find out where there are some? He's currently got input from speech & language specialists, dieticians, endocrine dr, has had CT scans of thymus (all ok) and abdominal scans all ok.

Is this a condition you suffer with too ?

hairymuffet Sun 20-Nov-16 19:30:27

No, I don't have it, but know someone who does unfortunately.
I'm not sure of any resources in your area, but will ask around and maybe pm you later in the week.

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