tengo a mi esposa que esta con este mal y es el momento que le quitan todas sus defensas todo esto para que le baje la inflamación de la médula ella perdio el movimiento de la cintura para abajo
y realmente necesito ayuda el tratamiento es muy costoso y ya no tengo dinero somos una familia umilde en lima peruagradesco toda ayuda por que esta enfermedad de mi esposa a afectado a mi y mis hijos ayuda porfavor ella esta hospitalizada en el ARSOBISPO LOAYSA DE LIMA PERU PABELLON 4 CAMA 22 ayuden
i had guillain barre almost 2 years ago, along with my paralysis, my feet did the exact same thing. they still do it at night if i try to move my toes at all. i've recovered to about 80-90%...i can walk without a cane but i can't be on my feet for very long. the paralysis part was really, really frightening. here's my experience.........watch?v=L-EeerjouUc
@itchyfiddle my sister's feet do that alla day..except when she is wearing her shoes... toes are bend inside the shoe... but when she takes off her shoes her feet go crazy... as i said b4 when she gets anxious nervous afraid really sad... her whole body goes like that...more severe locking and spasms... she has cidp not guillain barre..
@itchyfiddle IVIG treatments have changed my life. Look up...cidpusa.com It explains the procedure. At one point there was no hope for me.Now I have my legs back
i have cidp have been on ivig for over 2 years now. you might want to talk to doc. about LDN i have been on it for 9 months and my cramps have been reduced by 90% and the cramps i still get are not as severe as they were LDN has made a big improvement in my life.Kiss your sister, tell her i'm thinking about her ,
They should start plasma phoresis right away. Then get her on IVIG ASAP after she is stable enough. Good luck. I've only had it for about 7 years. Just starting therapy in a week. Either IVIG or prednisone.
@edwardschlosser1 it's been about 20 years she's been diagnosed with cidp..done everything but nothing worked... she also has other health problems as diabetis ,extremely low potassium ,kidney prob...
@nfcat1 She sounds like a candidate for a stem cell transplant. Northwestern University is currently doing these in clinical studies. I'd suggest you give them a call and see if they can help you. I would definately get a second opinion on the diagnosis. The hypocalemia is a very important part of the diagnosis, but may be secondary to her kidney disease, and completely unrelated to CIDP, if she has it. Hypocalemia is causing the cramping. They may try a potassium drip with dialysis.
@nfcat1 Try the plasma phoresis again. It may be difficult on her kidneys, but there is no reason why it shouldn't at least give some temporary relief. Watch the K levels. This can cause arrythemias and cardiac arrest. Have them start a K drip if necessary, and have them keep a very close eye on the drip and her vitals while doing it. That is very important.
I have CIDP. Nowhere near as severe as this. Are you sure this is CIDP? Is she sero-positive for antibodies? Has she been through plasmaphoresis? Prednisone? IVIG? Northwestern University is having excellent results with stem cell transplants. Neurontin may relieve some of the symptoms and neuropathic pain. Was she fairly functional until resently? When did she develop the severe tremors? I have mild tremors in my hands and no feeling from the knees down, but still have motor function
@edwardschlosser1 she is on neurontin but neurontin is only for pain... it doesnt help her at all... what u see on the video is not happening all day... started as a cramp abou two years on her legs... but never gone away..her feet stayed bend ever since... she can only walk if she wears her shoes... if she doesnt wear them her feet do involuntary movements and pulling like hell!!!!
@edwardschlosser1 every time she gets anxious afraid angry or is just tired that thing tranfers all over her body.. hand ,leg body in general locking.. cramps and spasms...it is really painfull ... visited a doctor but didnt knew what that was...gave her lyrica , and magnesioum... nothing worked again..i've been talking on facebook with some ppl that experience body lockin spasms and cramps but not so serious...
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cidpusa700 3 days ago
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tengo a mi esposa que esta con este mal y es el momento que le quitan todas sus defensas todo esto para que le baje la inflamación de la médula ella perdio el movimiento de la cintura para abajo
y realmente necesito ayuda el tratamiento es muy costoso y ya no tengo dinero somos una familia umilde en lima peruagradesco toda ayuda por que esta enfermedad de mi esposa a afectado a mi y mis hijos ayuda porfavor ella esta hospitalizada en el ARSOBISPO LOAYSA DE LIMA PERU PABELLON 4 CAMA 22 ayuden
vsjavicho1231 2 weeks ago
i had guillain barre almost 2 years ago, along with my paralysis, my feet did the exact same thing. they still do it at night if i try to move my toes at all. i've recovered to about 80-90%...i can walk without a cane but i can't be on my feet for very long. the paralysis part was really, really frightening. here's my experience.........watch?v=L-EeerjouUc
itchyfiddle 4 months ago
@itchyfiddle my sister's feet do that alla day..except when she is wearing her shoes... toes are bend inside the shoe... but when she takes off her shoes her feet go crazy... as i said b4 when she gets anxious nervous afraid really sad... her whole body goes like that...more severe locking and spasms... she has cidp not guillain barre..
nfcat1 4 months ago
@itchyfiddle IVIG treatments have changed my life. Look up...cidpusa.com It explains the procedure. At one point there was no hope for me.Now I have my legs back
audreylovesjesus1964 2 months ago
@audreylovesjesus1964 ivig doesn't work 4 everybody..and it didn't work 4 my sister either :/ we have tried ivig and did nothing!
nfcat1 2 months ago
@nfcat1 I had an alergic reaction to it..
zjbeast 1 month ago
i have cidp have been on ivig for over 2 years now. you might want to talk to doc. about LDN i have been on it for 9 months and my cramps have been reduced by 90% and the cramps i still get are not as severe as they were LDN has made a big improvement in my life.Kiss your sister, tell her i'm thinking about her ,
richrocketlll 5 months ago
@richrocketlll can u tell me what ldn is?(thnx 4 ur nice words..)
nfcat1 4 months ago
i was just diagnosed with this not quite two weeks ago. i pray for all who are suffering.
melvynn11 6 months ago
By sero-positve, I mean a lumbar puncture for cerebrospinal fluid. Is she sero-positive? Does she have an elevated sed rate? Is she anemic?
edwardschlosser1 6 months ago
They should start plasma phoresis right away. Then get her on IVIG ASAP after she is stable enough. Good luck. I've only had it for about 7 years. Just starting therapy in a week. Either IVIG or prednisone.
edwardschlosser1 6 months ago
@edwardschlosser1 it's been about 20 years she's been diagnosed with cidp..done everything but nothing worked... she also has other health problems as diabetis ,extremely low potassium ,kidney prob...
nfcat1 5 months ago
@nfcat1 She sounds like a candidate for a stem cell transplant. Northwestern University is currently doing these in clinical studies. I'd suggest you give them a call and see if they can help you. I would definately get a second opinion on the diagnosis. The hypocalemia is a very important part of the diagnosis, but may be secondary to her kidney disease, and completely unrelated to CIDP, if she has it. Hypocalemia is causing the cramping. They may try a potassium drip with dialysis.
edwardschlosser1 5 months ago
@nfcat1 Try the plasma phoresis again. It may be difficult on her kidneys, but there is no reason why it shouldn't at least give some temporary relief. Watch the K levels. This can cause arrythemias and cardiac arrest. Have them start a K drip if necessary, and have them keep a very close eye on the drip and her vitals while doing it. That is very important.
edwardschlosser1 5 months ago
I have CIDP. Nowhere near as severe as this. Are you sure this is CIDP? Is she sero-positive for antibodies? Has she been through plasmaphoresis? Prednisone? IVIG? Northwestern University is having excellent results with stem cell transplants. Neurontin may relieve some of the symptoms and neuropathic pain. Was she fairly functional until resently? When did she develop the severe tremors? I have mild tremors in my hands and no feeling from the knees down, but still have motor function
edwardschlosser1 6 months ago
@edwardschlosser1 she is on neurontin but neurontin is only for pain... it doesnt help her at all... what u see on the video is not happening all day... started as a cramp abou two years on her legs... but never gone away..her feet stayed bend ever since... she can only walk if she wears her shoes... if she doesnt wear them her feet do involuntary movements and pulling like hell!!!!
nfcat1 5 months ago
@edwardschlosser1 every time she gets anxious afraid angry or is just tired that thing tranfers all over her body.. hand ,leg body in general locking.. cramps and spasms...it is really painfull ... visited a doctor but didnt knew what that was...gave her lyrica , and magnesioum... nothing worked again..i've been talking on facebook with some ppl that experience body lockin spasms and cramps but not so serious...
nfcat1 5 months ago
Please: look for the channel CIDINHATRIX and for the channel "worldautohemotherapy" in youtube - auto hemotherapy can help this woman !! Believe ...
noexluna 6 months ago
Chronic inflammatory demyelinating polyneuropathy..it's something like multiple sclerosis... :/
nfcat1 6 months ago
What's C.I.D.P? :O I'm so sorry for what happend to your sister :(
polskpojjkeh 6 months ago