NeuroTalk Support Groups - More Questions

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - More Questions (https://www.neurotalk.org/myasthenia-gravis/78717-questions.html)

Becky, one quick comment on AnnieB3's latest post: in France, we have a special card which we carry in our wallet or purse to indicate to 911 or ICU personnel that we are myasthenics, it contains a short description of the disease, precautions to take and above all, medications to avoid and references (name and telephone number) for the neuro or MD in charge + present treatment.
I do not know whether such info exist in US, if not, it could be useful to get in touch with the MGA…
Maurice.

OMG - you read my thoughts!! I was just thinking that early on, it was recommended that I get a bracelet identifying me as myasthenic. I was still in denial then, but just was considering getting that done!

Hey, I was just thinking of that long, drawn out dissertation I gave you all on my symptoms and realized I had been using those steroid creams on the rash for some time prior to the neuro giving me the oral steroids. Do you think maybe that's why I get such an immediate boost from the oral med????
HUMMMMMM!

I have F/U with the neurosurgeon that did my coil today. I'm going to grill them the little complication I had following the procedure. Something about that procedure triggered this, I know in my gut.

This has been so helpful to bounce info. Thanks so much to all of you!!!:grouphug:

Becky

Quote:

Originally Posted by erinhermes (Post 471006)

I felt better after a few days - BUT I was also on IV IG at the same time. It was during my last real crisis, so I was on roids, mestinon and had that IV IG flowing into my veins as fast at they could give it to me........

I was started @ 10 mgs, doubled to 20 the 2nd day and by the 8th day I was at 80 mgs - @ 80 I felt GREAT!

Sounds like your neuro has things backwards........

I was told by my onc and neuro that steroids can initially cause pretty serious weakness - especially in the legs - learned that the hard way - got stuck - and that's why I was started on everything while still on the hospital.........

Hope you get some relief soon! :hug:

Erin

Hi ras1256,
I wear a medicalert bracelet and now carry a steroid identification card. I've never had to use either, but I guess it's just another precaution. If nothing else my medic-alert bracelet has been the start of many conversations, especially with my pupils - kids are very inquisitive and I otherwise probably wouldn't talk about my condition.

I've also heard of individuals who keep a list of their meds and an explanation of their condtion at their doorway in case of emergency. My husband is really well briefed, so I haven't done this - but probably should!!

Hope everyone is well.
~Kathy

Quote:

Originally Posted by ras1256 (Post 471086)

What a great idea!

Kathy ~ what a fabulous idea! Since there are certain meds we cannot take it is also very, very wise!

I keep a list of all my meds and my old bracelet from the hosp with MG written all over it - but I will try and get one ASAP!

:hug:
Erin:hug:

Quote:

Originally Posted by Scots Kat (Post 471177)