CIDP v GBS: The doctors tried treating me for GBS from March 19th until July 1 and their one time treatments did not work. The paralysis went from my legs and feet into my arms and hands. My new neurologist got out a calendar and counted the number of weeks since the onset of symptoms and said it was time to start treating for CIDP. Besides, my symptoms developed over an extended period (it was weeks before they were bad enough for me to seek treatment), whereas the onset of GBS is much faster.
In some ways, I think it was fortunate to have CIDP-the people I know who have had GBS have a much harder time of it than I do. The illness may return, but my neurologist assured me that future episodes will not be as severe as the first time. Of course, if by some miracle, I was given a choice...
Michael - I am incredibly grateful and happy for your great news. I am a little confused though because you did say "one and only attack" and that sounds like Guillain Barre and not CIDP. GB is characterized by a one time event from which you recover. CIDP is characterized by a slow onset of symptoms, usually longer than 8 weeks, and which is at the present time incurable. So is it possible that instead of having a remission from CIDP, you are actually having a recovery from GB? Joann
Hi. I have problems with breathing at times. I am almost 5 years into this. The breathing problems started within a few weeks of the onset. We always did this test, I forgot the name, but you suck into a tiny straw. That test measures the strength of your diaphragm. It would vary a lot depending how well controlled my cidp was. I did do rehab to help strengthen my core. About 2 years ago it got really hard again for a few months. I saw a pulmonary specialist and had lots of testing including lung xrays to rule out other things. I was anemic and had iron infusions. I did a sleep study and she found I needed a vpap. She said that breathing good at night improves it during the day. I have a hard time using the vpap because of central fatigue which seems to be involved when my diaphragm is weak. It has only been a problem a few times and for months at a time, not the whole time. I would recommend seeing a pulmonary specialists, one who specializes in neurological conditions. Ask for a sleep study if you haven't had one yet. Maybe you would tolerate subq ig better. Controlling the cidp helps with my breathing issues. I hope you find something that works, very soon.
Doggymama said:
Hello everyone! I was dx w CIDP exactly 2 years ago this month. I was walking on frozen feet & legs for six months & my arms & hands were following. I was seeing a neuro who did three EMGs and kept telling me "you have nerve damage but I don't know why". I would spent hour after obsessive hour online trying to find an answer. Finally, when I read about CIDP, sadly I knew every detail fit. He said that wasn't what I had, pat my head & said pretty much said leave the real work to the doctors. I thank my husband for finding a new Dr who within 5 minutes of a repeat EMG, knew I had CIDP. I got 5 day IvIg in a row & went to 2 days every three weeks. I was getting so sick from treatment (vomiting, nausea, shaking, fevers, aches, flu feeling) that Dr dropped it to one day every three weeks. I was never on immunosuppressives. I take prednisone before treatment to reduce side effects. I did ok for a while but now have a lot of numbness in hands and feet and breathing problems. The dr says the breathing issue could be my diaphragm freezing up. Please God, not the diaphragm. I am terrified all the time.
Has anyone else had a bad reaction to ivig? Has anyone had difficulty breathing?
Happy - thank you for being so honest with your feelings. It makes me feel less alone.
Michael - I am incredibly grateful and happy for your great news. I am a little confused though because you did say "one and only attack" and that sounds like Guillain Barre and not CIDP. GB is characterized by a one time event from which you recover. CIDP is characterized by a slow onset of symptoms, usually longer than 8 weeks, and which is at the present time incurable. So is it possible that instead of having a remission from CIDP, you are actually having a recovery from GB? Joann
Reply to all. Do not play-away early successes. Please give us who have months of crap gone away. I have waited 2 years for treatment. After my loading dose...5 days... I have had a tremendous success. Yep, Happy, I got my life back. Now I can drive, open every bottle in the house. hub used to open every thing in kitchen (bottles, cans, etc..) before he left for work. Honest, I can do all of that now. In July 2013, I went to drive my car...and I could not turn the key. I knew then I needed more help. I am ongoing....I will not stop. I want to feel my hair, my dogs fur, my sheets on the bed. All of that were like razors on my fingertips. No, I will not go back. I feel too good now. My treatment is the 28 days off 2 on. Working for me. Keep hydrated.
I was diagnosed in la†e july of 2013.Went in the hospital and had 10 infusions of IVIG.Then my doctor put me on prednisone,potassium,and famotidine.At that time I was totally numb in my hands,feet and legs.I could NOT walk had to use a walker to get to the bathroom.I was helpless,thankGod for a wonderful caring wife.Fast forward today and I am in complete remission.Playing golf every day.Lost ALL the numbest in my feet .hands and legs.I know the s†ores on here as well.Mos† of these fine people don`† have †he good fortune to tell my story.I`am very very lucky.But I know I could relapse at any time.Theirs no cure for our illness.But their are success stories.I know I`am not the only one.
For me I think the turning point was the "prednisone" I am slowly lowering the dosage.I have no side effec†s from it either so far.Lots of people on here don`t do well with it.Every one reacts different.Also a doctor that knows CIDP is so important.Lots don`t have a clue.Good luck and keep the faith
Hi John
Clever doctor…the famotidine to protect the stomach against the steroids, and the potassium to supplement your diet with good things. You are very lucky you responded to the steroid.
Stay well. Thank you for the info.
Regards
Happy
I am particularly interested in the tightness “band” around upper stomach. This was my first symptom and is getting gradually worse. No amount of pain medication helps. I have a CPAP machine and have not been using it. Will that help?
I ccc
Cookie said:
Doggymama said:
Hello everyone! I was dx w CIDP exactly 2 years ago this month. I was walking on frozen feet & legs for six months & my arms & hands were following. I was seeing a neuro who did three EMGs and kept telling me “you have nerve damage but I don’t know why”. I would spent hour after obsessive hour online trying to find an answer. Finally, when I read about CIDP, sadly I knew every detail fit. He said that wasn’t what I had, pat my head & said pretty much said leave the real work to the doctors. I thank my husband for finding a new Dr who within 5 minutes of a repeat EMG, knew I had CIDP. I got 5 day IvIg in a row & went to 2 days every three weeks. I was getting so sick from treatment (vomiting, nausea, shaking, fevers, aches, flu feeling) that Dr dropped it to one day every three weeks. I was never on immunosuppressives. I take prednisone before treatment to reduce side effects. I did ok for a while but now have a lot of numbness in hands and feet and breathing problems. The dr says the breathing issue could be my diaphragm freezing up. Please God, not the diaphragm. I am terrified all the time.
Has anyone else had a bad reaction to ivig? Has anyone had difficulty breathing?
Happy - thank you for being so honest with your feelings. It makes me feel less alone.
Michael - I am incredibly grateful and happy for your great news. I am a little confused though because you did say “one and only attack” and that sounds like Guillain Barre and not CIDP. GB is characterized by a one time event from which you recover. CIDP is characterized by a slow onset of symptoms, usually longer than 8 weeks, and which is at the present time incurable. So is it possible that instead of having a remission from CIDP, you are actually having a recovery from GB? Joann
Dear Doggymama,
I had symptoms similar to yours for probably up to two years, although I called them "mannequin legs." Upon walking even minimal lengths my legs would turn to rubber, and I'd have to rest. This was quite unlike me since I had always done up to 5 days of "spinning" which is an indoor form of cycling simulating outdoor cycling. I had pretty good stamina and strength in my legs for most of my life. Once I started to not be able to hold my heavy work bags or open doors in office buildings, I figured the arms were affected too and I knew I had something very weird going on with my nerves and/or muscles. After being examined by three neurologists and having multiple EMGs like yourself, I was finally diagnosed with CIDP this past October after having high protein in my spinal fluid. I had the 5 days loading dose of IVIG and now I'm scheduled to have two doses per month until I have some type of improvement, which I haven't had yet.
I really wanted to respond to your feelings about your diaphragm "freezing up", however, because I have felt that all through this time, in addition to the legs and arms being weak. I would have to be conscious of taking deep, abdominal breaths and I'd often feel like my abdomen had a strong binder around it. I did read that this is a common feeling among people who have GBS (also in patients with MS) but not so much in people with CIDP. The feeling gets worse at times, then not so bad...I'm not sure what makes it worse. I just make sure to sit upright and do deep abdominal breathing exercises. When it happens at night when I'm trying to go to sleep, it's especially scary, but thus far it has not progressed beyond the feeling of my abdominal (diaphragmatic) area being constricted. I have always been able to sit and concentrate on taking deep breaths without difficulty. I did speak to a physical therapist who said this might just be a muscle spasm or constriction of the diaphragm, and as such, it can be "stretched" much like we stretch our other muscles due to the tightness and spasms. It's also particularly annoying when I have a seatbelt on in the car! I'm thinking the seatbelt triggers the abdominal reflex muscles which go on overdrive. Hopefully this is what you are feeling and if so, please try and not stress about it being your diaphragm "freezing up" because we all know that stress of any kind (especially the thought of not being able to breath!) can make the symptoms of this condition horribly worse.
I am particularly interested in the tightness “band” around upper stomach. This was my first symptom and is getting gradually worse. No amount of pain medication helps. I have a CPAP machine and have not been using it. Will that help?
I ccc
Cookie said:
Doggymama said:
Hello everyone! I was dx w CIDP exactly 2 years ago this month. I was walking on frozen feet & legs for six months & my arms & hands were following. I was seeing a neuro who did three EMGs and kept telling me “you have nerve damage but I don’t know why”. I would spent hour after obsessive hour online trying to find an answer. Finally, when I read about CIDP, sadly I knew every detail fit. He said that wasn’t what I had, pat my head & said pretty much said leave the real work to the doctors. I thank my husband for finding a new Dr who within 5 minutes of a repeat EMG, knew I had CIDP. I got 5 day IvIg in a row & went to 2 days every three weeks. I was getting so sick from treatment (vomiting, nausea, shaking, fevers, aches, flu feeling) that Dr dropped it to one day every three weeks. I was never on immunosuppressives. I take prednisone before treatment to reduce side effects. I did ok for a while but now have a lot of numbness in hands and feet and breathing problems. The dr says the breathing issue could be my diaphragm freezing up. Please God, not the diaphragm. I am terrified all the time.
Has anyone else had a bad reaction to ivig? Has anyone had difficulty breathing?
Happy - thank you for being so honest with your feelings. It makes me feel less alone.
Michael - I am incredibly grateful and happy for your great news. I am a little confused though because you did say “one and only attack” and that sounds like Guillain Barre and not CIDP. GB is characterized by a one time event from which you recover. CIDP is characterized by a slow onset of symptoms, usually longer than 8 weeks, and which is at the present time incurable. So is it possible that instead of having a remission from CIDP, you are actually having a recovery from GB? Joann
Dear Doggymama,
I had symptoms similar to yours for probably up to two years, although I called them "mannequin legs." Upon walking even minimal lengths my legs would turn to rubber, and I'd have to rest. This was quite unlike me since I had always done up to 5 days of "spinning" which is an indoor form of cycling simulating outdoor cycling. I had pretty good stamina and strength in my legs for most of my life. Once I started to not be able to hold my heavy work bags or open doors in office buildings, I figured the arms were affected too and I knew I had something very weird going on with my nerves and/or muscles. After being examined by three neurologists and having multiple EMGs like yourself, I was finally diagnosed with CIDP this past October after having high protein in my spinal fluid. I had the 5 days loading dose of IVIG and now I'm scheduled to have two doses per month until I have some type of improvement, which I haven't had yet.
I really wanted to respond to your feelings about your diaphragm "freezing up", however, because I have felt that all through this time, in addition to the legs and arms being weak. I would have to be conscious of taking deep, abdominal breaths and I'd often feel like my abdomen had a strong binder around it. I did read that this is a common feeling among people who have GBS (also in patients with MS) but not so much in people with CIDP. The feeling gets worse at times, then not so bad...I'm not sure what makes it worse. I just make sure to sit upright and do deep abdominal breathing exercises. When it happens at night when I'm trying to go to sleep, it's especially scary, but thus far it has not progressed beyond the feeling of my abdominal (diaphragmatic) area being constricted. I have always been able to sit and concentrate on taking deep breaths without difficulty. I did speak to a physical therapist who said this might just be a muscle spasm or constriction of the diaphragm, and as such, it can be "stretched" much like we stretch our other muscles due to the tightness and spasms. It's also particularly annoying when I have a seatbelt on in the car! I'm thinking the seatbelt triggers the abdominal reflex muscles which go on overdrive. Hopefully this is what you are feeling and if so, please try and not stress about it being your diaphragm "freezing up" because we all know that stress of any kind (especially the thought of not being able to breath!) can make the symptoms of this condition horribly worse.
Cookie, thank you for sharing your story and helping to calm me a bit. I still have periods of extreme anxiety no much how much i try not to. The last four months, ivig has stopped working but i am still very sick from the side effects. I have trouble swallowing and the breathing feeling still. This last ivig infusions (2days 30 per day plus solu medrol) I had such bad chest pain, i had to go the er. The pain lasted for two weeks. So now my dr wants me off ivig and wants to try 400mg of solu medrol every four weeks. As someone who has also had crohns disease for 30 years, I am terrified about going on steroids again. I have been told that taking oral is a lot worse than iv but i am still nervous. A few weeks ago, i also woke up wiyh double vision and an inability to focus my eyes. That was so upsetting bc i was unable to do anything, not even watch tv or read. I have not been able to drive for 6 months. I went to a neuro opthamologist and he tested me for myastinia Gravis. Yet another nightmare autoimmune disease but this would explain the eyes, the throat tightness and the breathing issues than seem to not be cidp relaated. I tried lyrica and felt so much better but the side effects were so bad, i had to stop. I am numb, burning, fatigued, trouble swallowing and breathing and i am very scared. Waiting 3 weeks for results of blood test and all the snow in new york is slowing everything down to a crawl. Can anyone share their experiences with iv solu medrol? Did it help symptoms? Were the side effects horrible?
Cookie said:
Doggymama said:
Hello everyone! I was dx w CIDP exactly 2 years ago this month. I was walking on frozen feet & legs for six months & my arms & hands were following. I was seeing a neuro who did three EMGs and kept telling me “you have nerve damage but I don’t know why”. I would spent hour after obsessive hour online trying to find an answer. Finally, when I read about CIDP, sadly I knew every detail fit. He said that wasn’t what I had, pat my head & said pretty much said leave the real work to the doctors. I thank my husband for finding a new Dr who within 5 minutes of a repeat EMG, knew I had CIDP. I got 5 day IvIg in a row & went to 2 days every three weeks. I was getting so sick from treatment (vomiting, nausea, shaking, fevers, aches, flu feeling) that Dr dropped it to one day every three weeks. I was never on immunosuppressives. I take prednisone before treatment to reduce side effects. I did ok for a while but now have a lot of numbness in hands and feet and breathing problems. The dr says the breathing issue could be my diaphragm freezing up. Please God, not the diaphragm. I am terrified all the time.
Has anyone else had a bad reaction to ivig? Has anyone had difficulty breathing?
Happy - thank you for being so honest with your feelings. It makes me feel less alone.
Michael - I am incredibly grateful and happy for your great news. I am a little confused though because you did say “one and only attack” and that sounds like Guillain Barre and not CIDP. GB is characterized by a one time event from which you recover. CIDP is characterized by a slow onset of symptoms, usually longer than 8 weeks, and which is at the present time incurable. So is it possible that instead of having a remission from CIDP, you are actually having a recovery from GB? Joann
Dear Doggymama,
I had symptoms similar to yours for probably up to two years, although I called them "mannequin legs." Upon walking even minimal lengths my legs would turn to rubber, and I'd have to rest. This was quite unlike me since I had always done up to 5 days of "spinning" which is an indoor form of cycling simulating outdoor cycling. I had pretty good stamina and strength in my legs for most of my life. Once I started to not be able to hold my heavy work bags or open doors in office buildings, I figured the arms were affected too and I knew I had something very weird going on with my nerves and/or muscles. After being examined by three neurologists and having multiple EMGs like yourself, I was finally diagnosed with CIDP this past October after having high protein in my spinal fluid. I had the 5 days loading dose of IVIG and now I'm scheduled to have two doses per month until I have some type of improvement, which I haven't had yet.
I really wanted to respond to your feelings about your diaphragm "freezing up", however, because I have felt that all through this time, in addition to the legs and arms being weak. I would have to be conscious of taking deep, abdominal breaths and I'd often feel like my abdomen had a strong binder around it. I did read that this is a common feeling among people who have GBS (also in patients with MS) but not so much in people with CIDP. The feeling gets worse at times, then not so bad...I'm not sure what makes it worse. I just make sure to sit upright and do deep abdominal breathing exercises. When it happens at night when I'm trying to go to sleep, it's especially scary, but thus far it has not progressed beyond the feeling of my abdominal (diaphragmatic) area being constricted. I have always been able to sit and concentrate on taking deep breaths without difficulty. I did speak to a physical therapist who said this might just be a muscle spasm or constriction of the diaphragm, and as such, it can be "stretched" much like we stretch our other muscles due to the tightness and spasms. It's also particularly annoying when I have a seatbelt on in the car! I'm thinking the seatbelt triggers the abdominal reflex muscles which go on overdrive. Hopefully this is what you are feeling and if so, please try and not stress about it being your diaphragm "freezing up" because we all know that stress of any kind (especially the thought of not being able to breath!) can make the symptoms of this condition horribly worse.
I just want to know what lays ahead…but they…the neuro’s are silent. All have the same limited knowledge…and deny when I ask…“do you have another patient like me?” Am I stupid…not at all but they make me feel scared…when they have said “not at all…of course not” I give them info…they give me Bullshit!" Fourteen years in and no further forward.,.but be a good little rabbit…let’s try this and see…! Well now I am thinking stuff you…I have a way out despite you.