they all say it takes time to go into remission my wife has not stood for over 7 months except for a short period of slight arm and leg movement she has been paralyzed from the neck down for over 7 months went off the resperater 4 months ago and 2 minths ago do to weakness of breath was put on a hyack the modern day iron lung at night and most of the day.
we have had over 60 plazma treatments 5 months of chemo cyclophosphamide currently doing a new protocol of ivig following the weekly plazma and taking 85mg of prednisone daily.
want to know if any one has had so a prolonged experience . although we try to be hopeful but we have not heard of such an extreme case from anyone yet.
Hi. I was able to stand and walk (verry slowly) in about three weeks. Like MDOLICH said, everyone is different and respond differently to treatment, just go on with the treatment and BELIEVE you’ll walk again. I’ve recovered so munch that I don’t. need IVIG any more. Good luck.
I get 240 grams/mo @ 120 grams every two weeks. Plus, 50 mg Imuran 2x / day. However, I want to go to a weekly infusion. You might ask for a higher amount o of IgG, as this is what helped me. I also discovered that physical therapy in a pool, swimming helped me tremendously.
I'm thinking this might be an undetected 2nd neurological problem. I was misdiagnosed (Kaiser) for 8 years with diabetic neuropathy. Good luck to you both!
There is always hope. I was diagnosed in 1987 and finally went into remission in 1995, a full 8 years and a couple months. I had so many treatments I can’t remember! I was also confined to a wheelchair off and on throughout those 8 years, and also needed assistance with bathing, cutting food (and sometimes getting it to my mouth), personal care, and sitting/laying down and getting up again. Today I’m still in remission with some residual nerve damage which prevents me from running but not walking - and I can go up and down steps at will!!! The point is that no one knows how CIDP will progress from one patient to another. My 8 years I think is pretty extreme (for length of time in consistent relapsing) but I wanted to reassure you that length of time is not an indicator of much. The condition is just so all-over-the-place. Don’t give up hope for remission, ever. Stay strong and recognize your own needs as well. Care givers need coping time, too. Hang in there!
I am very much your wife. 14 years ago I developed very aggressive CIDP. It has in the past and is currently trying hard to kill me. Because it looks like you live in Israel, I am going to jump to what you wife probably needs right now. Israel is one of only 3 places in the world (the others are Northwestern Medical in USA and a hospital in Moscow, Russia) that runs a stem cell transplant program for CIDP patients. It actually uses your own stem cells so there is moral discussion about where the stem cells came from. It sounds like your wife absolutely qualifies. You most have CIDP that has, at anytime, responded-even if only a little bit-to IVIG or plasma parethesis or steroids. This ensures it really is autoimmune based CIDP. The next criteria is that the disease no longer responds to standard treatments. The stem cell transplants is basically a cure-no joke. In the USA location only one person, who had a transplant, ended up with any return of CIDP symptoms. Even in that case, the symptoms returned 5 years later and went into remission with one 5 day round of IVIG. I am very surprised your doctor has not sent your wife for a formal evaluation for stem cell transplant. The USA hospital is a clinical trial and therefore eliminates many people who qualify in Israel and Russia. Ironically, I was just turned down here in the USA because of an unrelated medical issue but qualify there. I now have to decided if I am going oversees, or even if my body will hold up to go out of the country. I have partial paralysis of my diaphragm, no movement or sensation in my legs at all, no function or sensation in hands, fingers and lower forearms. Even with massive doses of IVIG-I use 240 grams of IVIG threw a permanent central port in my chest that runs to my heart that takes 5 full days in the hospital to get it in. I end up hospitalized for 7 days every 4 weeks to get the IVIG because of how badly my body responds to it. IVIG slows my CIDP down at this point-without it I would be a full quadrapledgic and back on a vent- but it causes me to have chronic red blood cell anemia, blood clots, and drug induced meningitis. I wish you well and hope she gets the transplant. If she doesn't, push for higher levels of IVIG to see if it helps.
I am very much your wife. 14 years ago I developed very aggressive CIDP. It has in the past and is currently trying hard to kill me. Because it looks like you live in Israel, I am going to jump to what you wife probably needs right now. Israel is one of only 3 places in the world (the others are Northwestern Medical in USA and a hospital in Moscow, Russia) that runs a stem cell transplant program for CIDP patients. It actually uses your own stem cells so there is moral discussion about where the stem cells came from. It sounds like your wife absolutely qualifies. You most have CIDP that has, at anytime, responded-even if only a little bit-to IVIG or plasma parethesis or steroids. This ensures it really is autoimmune based CIDP. The next criteria is that the disease no longer responds to standard treatments. The stem cell transplants is basically a cure-no joke. In the USA location only one person, who had a transplant, ended up with any return of CIDP symptoms. Even in that case, the symptoms returned 5 years later and went into remission with one 5 day round of IVIG. I am very surprised your doctor has not sent your wife for a formal evaluation for stem cell transplant. The USA hospital is a clinical trial and therefore eliminates many people who qualify in Israel and Russia. Ironically, I was just turned down here in the USA because of an unrelated medical issue but qualify there. I now have to decided if I am going oversees, or even if my body will hold up to go out of the country. I have partial paralysis of my diaphragm, no movement or sensation in my legs at all, no function or sensation in hands, fingers and lower forearms. Even with massive doses of IVIG-I use 240 grams of IVIG threw a permanent central port in my chest that runs to my heart that takes 5 full days in the hospital to get it in. I end up hospitalized for 7 days every 4 weeks to get the IVIG because of how badly my body responds to it. IVIG slows my CIDP down at this point-without it I would be a full quadrapledgic and back on a vent- but it causes me to have chronic red blood cell anemia, blood clots, and drug induced meningitis. I wish you well and hope she gets the transplant. If she doesn't, push for higher levels of IVIG to see if it helps.
Emg/ncv's measure definitively if your wife is in remission. They can also measure some remyelination. It may also confirm that her whole problem is cidp and not a new undetected secondary one. I was tested every few months initially until I found some sort of stability. My treatment was adjusted many times. I started with a 5 day loading dose of ivig. It stopped the progression for a time. I overextended myself in rehab and needed weekly, 1 gram methylprednisolone, iv for 3 months. The infusions helped bring me back.
Once a treatment is found to put her into remission, improvements can continue for 3 or more years if axonal damage was incurred. I had a lot of damage including sensory losses and there were times when I was not able to tell if I was getting better or if the medicine was effective. That's why the emg's were so important.
I was initially diagnosed with gbs. The first 3 years were hard with severe relapses. I started researching and making changes. I have been very stable and fully functional after learning ways to prevent stress, correct deficiencies, eliminate food allergies and avoid certain medications. The majority of my food is organic and grass fed. I take antioxidants also. Terry Wahls, Minding Your Mitochondria may be of interest. There is a Ben's Friends gbs site that may help too.
The hardest part was coping with labored breathing. I was not on a respirator. I was able to compensate by breathing extremely shallow for many years. I was given a vpap machine but it was too much. It exhausted me and cramped my lungs. I was given a resuscitator which worked well. I used it many times throughout the day to pump air and expand my lungs. I had weakness in my vocal cords as well and found that singing helped strengthen both vocal and lung functions. Best therapy by far is Maya Fiennes yoga. It is focused on neurological issues, breathing being paramount. It is the single most reason I can breathe easily today. I started slow with 1 minute increments. I felt dizzy and nauseas but kept it up. I can go 2 hours straight now.
The point is that no one knows how CIDP will progress from one patient to another. My 8 years I think is pretty extreme (for length of time in consistent relapsing) but I wanted to reassure you that length of time is not an indicator of much. The condition is just so all-over-the-place. Don’t give up hope for remission, ever. Stay strong and recognize your own needs as well. Care givers need coping time, too. Hang in there!