Concerned sister

[QUOTE=wifeofthegreat1]Glad i found you all. I’ll try for a quick summary.
my youngest sister(29) was diagnosed with lupus in around August. i have lupus as does mom…we’ve had no major problems.
A few weeks later she is having tingling in feet toes, etc. moves to legs. Dr does spinal while treating her for lupus and calls it GBS.Later they realized it was CIDP. he treats with high doses of prednisone. meanwhile it just gets worse. WIthin just a few weeks she is using a walker, then a wheelchair. They do Plasmapherisis…nothing.
Then admitted to hospital because she’s just too heavy to help around since she gained wait from the prednisone and is of no help ini her lower body.
She began to lose the use of her left arm and finally spread to her right side as well. The last straw was when it took her breathing. She is now on a trach, feeding tube and is completely paralyzed except for blinking her eyes.
that is how we communicate with her. We go through the alphabet and she blinks when we get to the correct letter. And believe me…her MIND is ALL there!! She knows EVERYTHING that is going on…always. She is a piano player and music teacher. She, myself and my other sister are like the Mandrell sisters when it comes to singing. It has only been since Thanksgiving that she has been completely paralyzed and i feel like its been a lifetime. She celebrated her 30th birthday with her husband of only 2 years in the hospital. paralyzed, but fully aware of EVERYTHING going on. I can’t even imagine. We have a very close family and someone has been there everyday.

I guess this wasn’t exactly short. sorry.

Stories? Hope? Words of encouragement…
Thanks, Jenny:o[/QUOTE]

Hi Jenny, I think I posted to your message on CIDP Facebook, but any how, do keep faith and hope alive, because there are others who have been where your sister is and they have recovered…..yes, it was a long process and certainly not easy, but things can change for the better. There is no set protocol for this awful disease, it seems to do as it wishes in spite of our attempts to salvage our lives…..but having faith in the promise of tomorrow, positive energy and love can all move mountains. So glad your sister has you. Please keep us posted. I am a CIDP sufferer with major pain and weakness….have done IVIG and had an allergic reaction, seeking other treatments currently. Also my breathing has been affected and am doing tests currently to find out exactly what is going on. Big hugs to you, your sis and family.

Jenny, I’m glad you found the Forum. I am so sorry to hear what your sister is going through.

You didn’t say how they are currently treating her CIDP.

Steroids and PE aren’t effective for a lot of folks. It seems most have better success with IVIg.

Please pass along my cyber hug to your sister from a fellow sufferer of CIDP.

Be encouraged that people have and can recover motor function and sensory with effective treatments. But also take this as a gentle encouragement to continue to press the neurologists to find an effective treatment for your sister. PUSH PUSH PUSH and then PUSH some more until you are satisfied that they are doing all they can. And the PUSH them beyond what can reasonable be expected. I can’t minimize the importance of an aggressive advocate for your sister.

Know that I’m praying for your sister and her family.

Thanks for being there for her.

Gary

read the posts under RHOMCC. rhonda and her son ryan have an interesting story. they have come a long way.

This story tears at my heart! I have a twin sister and i cant imagine how it must feel to see your sister so helpless!! My son who is 8 was dx CIDP about 6 months ago. He was a very weak little boy. He couldnt do anything alone, we were carrying him, he was using a walker but using it more as a wheelchair. He was treated for 5 straight days of Ivig and after 3 days he got up out of bed in the morning and walked to the bathroom on his own. I pray the doctors will find the right treatment for your sister!! Keep hoping!!