Please can anyone help..please - Immune Disorders Message Board

meeshy · 10-27-2006, 08:59 AM

Hello

My mum has just died on the 13th October and i am devasted.....

Whats hurting is that we don't really know what she had.....doctors suggested but never gave us a definate answer...saying it could be something to do with the immune system and with her having chronic rumathoid arithitis.....

Anyone heard or ever seen these symptons.....she firstly use to complain of an 'odd feeling' in her stomach....then her eyes started twitching...then got worse, but then came the 'jerking' it was like every muscle in her body was jerking, it was awful to see someone you love dearly my mum like this.....with the jerks she had very odd mouth movements and tongue too......the doctors tried a drug of which the mentioned was 'expensive' honestly....but they said it wasn't working....the jerking calmed down, although i could still see signs of the mouth movements.....she was put onto a ventilator for a while and then taken off...she was in an almost 'vegatable state' by then....with no real response from her at all if any.....

This is heartbreaking the not knowing what it was....i am going to write a letter to the hospital to see if they could send me the name of what they thought it could have been because i don't really think they new...all we were told was thats its very rare.....he did mention the name but we where also being told that morning that she was dying and it was the last thing on our minds...but now i need to know......!

Please have any of you seen anything like the above or heard of it before?

Any help/suggestions.....would be lovely thankyou so much...as the immune system was mentioned.

Love

Meeshy
xxx
Meeshy

JoJoMaMa · 01-27-2007, 01:21 PM

What meds was she on? She may have been reacting to a medicine. Enbrel has been know to cause fatalities in RA patients. I am so sorry for your loss.

hashigirl12 · 03-03-2007, 03:20 AM

hi,
not sure what happened. But I have RA w/ organ involvement, RA messed w/ heart, i was jerking and stuff. seems like i almost died from a stroke . RA almost almost caused me respiratory failure w/ me at the same time.

were2alike · 06-11-2007, 11:23 PM

Hello Messhy I read your post an so sorry about your lost of your lovely mom. if theres any one of the family have power of attorney cuz if so they can get copys of all your moms medical records from the first day she was seen about her diagnose. and if theres no family with the power of attorney then get a lawyer . Because you need to know why, and how she died and what was the reason she reacted the way she did.