I am a 37 year old female who was healthy until I was diagnosed with CIDP Aug 2014, a few days after giving birth. My symptoms started in my fifth month (Mar) but didn't get get serious until June and then it went downhill. I started a loading 5 day IVIG dose, waited 2.5 weeks, and now have started 1 day treatments every other week. I know everyone's recovery is different but can anyone tell me how their body felt when it was turning around? I have noticed increased pins and needles feeling, particularly in my feet as well as my hands. I also seem to have foot cramps (even though they aren't actually cramping). It also seems that I have good and bad days, one day where I can walk hanging onto a cart at the grocery and the next I'm scared I will fall even with the walker. Thank you for your comments!
For me with reasonable early intervention and diagnosis,it took several months of IVIG but for me I remember the day.
I said to my wife.Im climbing the stairs-to her horror but i went up and then i went down.Also,I could poo again properly,the agony of the constipation went and the next day I told my wife I was having a bath,unassisted-she shrieked remembering the 4 hours it took her to get me out when i was at my worst.
That's how it was for me and then you move to the next stage,trying to understand what has happened,why and maybe you need to make some changes.This is the really hard work.
The social side pops up.Disability is created by society and suddenly you realise you are a wobbly too,just like me.This is why we must campaign for our human rights which is what I do now.
Wow I can relate. I was diagnosed the same month and year. I hope "getting better" is obvious! My feet and hands cramp the same way. I keep looking at them. They appear normal, however I feel as if my fingers are stacked on top of one another. I also feel like my lower right leg is a wet towel being wrung out....twisted. The mind games keep coming. I'll be glad when what I feel is "what is".
I am 40 and I was diagnosed in Feb. It started with a numb hand and just took off from there, I forced my self to keep walking as much as I could. I own a business in a small mall and I would take an hour to walk what would take the average person 3 min. but I did it every day. I kept doing as much as I could. it was horrible. mostly because I didn't know what it was and I was determined not to let it get the best of me. I started ivig 15 weeks after the first treatment I noticed I could lift my foot . it starts out small, but you have to keep moving. I really notice if I spend too much time not moving its harder the next day. I am now walking on my own and have been for 3 months . we all know that everyone is different but as for your falling even with your walker, I had the same thing. my husband figured it out. if you take your mind off of walking for a split second you will fall. you reach for something or are standing listening to someone speak, and for that second you stop thinking of what your body is doing is when you will fall. you have to focus at all times. Oh I hope that helps you. I fell 17 times and hurt my self so much. its terrible. I have cramping in my feet and hands but find my knees ankles and hips are bad. I have gained a lot of weight and am now fighting to get rid of it. I am going to try exercise in the pool. I hear its good. If you eat a lot of breads you may want to consider cutting it way back and only eat rye bread. wheat is an inflammatory and can flare up cidp. if you would like to chat more, inbox me. I am going to my specialist on the 25th, people fly in from all over the world to see him. maybe I can run something by him
My weight loss from around 106 kgs to 77 now has been crucial to my recovery.I eat well,lots of oats and porridge,semi-skimmed milk,little cheese,masses of herbs,salad,yoghurt,fruits and fresh vegetables,fresh fish from the sea,oily if possible.and 2 litres of Cretan olive oil a day.I always have a half pint class mid-morning.It's called the Cretan diet.If you want to live to be 105 it's for you-not forgetting the wine although I prefer water these days.
mammabird said:
I am 40 and I was diagnosed in Feb. It started with a numb hand and just took off from there, I forced my self to keep walking as much as I could. I own a business in a small mall and I would take an hour to walk what would take the average person 3 min. but I did it every day. I kept doing as much as I could. it was horrible. mostly because I didn't know what it was and I was determined not to let it get the best of me. I started ivig 15 weeks after the first treatment I noticed I could lift my foot . it starts out small, but you have to keep moving. I really notice if I spend too much time not moving its harder the next day. I am now walking on my own and have been for 3 months . we all know that everyone is different but as for your falling even with your walker, I had the same thing. my husband figured it out. if you take your mind off of walking for a split second you will fall. you reach for something or are standing listening to someone speak, and for that second you stop thinking of what your body is doing is when you will fall. you have to focus at all times. Oh I hope that helps you. I fell 17 times and hurt my self so much. its terrible. I have cramping in my feet and hands but find my knees ankles and hips are bad. I have gained a lot of weight and am now fighting to get rid of it. I am going to try exercise in the pool. I hear its good. If you eat a lot of breads you may want to consider cutting it way back and only eat rye bread. wheat is an inflammatory and can flare up cidp. if you would like to chat more, inbox me. I am going to my specialist on the 25th, people fly in from all over the world to see him. maybe I can run something by him
Mine started during pregnancy too but I wasn’t diagnosed until three months postpartum. By then I was in pretty bad shape and have permanent nerve damage. After IVIG however, I did regain a lot of my strength back after about two months of treatment. It has stopped the progression and along with other meds I don’t have constant nerve pain anymore. It took me some time over many months but I am better today then where I was. I’ve had to make some adaptations to account for the limitations the nerve damage has caused and eat very healthy. Omega-3’s help me too.
My Husband was diagnosed with CIDP in 2005. His symptoms actually started in 2003 with intermittent loss of leg function that would only last a few seconds. A couple months before, he injured his neck when he fell down a creek bank. We thought this had something to do with his symptoms. After x-rays, MRIs and other tests, the only diagnosis he got from the neurologist he went to is that there was nothing wrong with him and he needed to see a psychiatrist. His systems got better for about a year. Then he had numbness in his right hand and weakness in this legs. He went to another neurologist who diagnosed the CIDP and put him on IVIG once a month for about 6 months. Since he was pretty much back to normal, he stopped the IVIG. After about another 6 months, he got worse again and was put back on IVIG. This treatment did not work as well the second time so he was put on IV steroids for about a year which helped him get back on his feet. However his upper body was now getting weaker. In the meantime, we went to 2 neurosurgeons who found a blockage in his neck but bot decided it was not bad enough to do surgery. After a few more months of IVIG, we saw a third neurosurgeon recommended by another doctor. He reviewed his tests, and found that the blockage was indeed worse than previously thought and he needed surgery right away. He regained all his upper body strength within a few months, but his legs and balance never got back to normal. His surgeon said that the blockage in his neck was there for so long that his leg function would probably never return to normal. That was probably what caused the CIDP. Now he is back on IVIG one day every 4 weeks. He has been pretty stable for the last couple of years He works for himself doing tasks that tax him physically, so he does get tired after awhile. But after about 20 minutes of rest, he is ready to go again. His doctor put him on Imuran a couple of months ago to start weaning him off the IVIG. So we will see what happens. He walks well with a cane. On his good days, he can walk without one. I believe exercise is the key. As long as he exercises, he can walk fairly well without a cane. But if he stops for a few days, I can really tell the difference.
I was diagnosed in January with cidp. I had the ivig series of 4 because I ended up in hospital with low sodium. Then I started ivig every 3 weeks. After the second 1 I had 1 day where I could walk 10 feet. I also gained some hand strength. Im in a power wheelchair and can do almost nothing with my arms also. All from cidp. Then nothing until after the 3rd ivig. I was able to walk 60 feet and short distances often. I could lift a gallon of milk. I was able to do the dishes 3 times. Then the insurance stopped my treatment because they didn’t c improvement. They were crazy. My Dr. Sent tons of proof and they let me start again. I lost all I gained and my pain got worse. I’ve had 2 ivig again and 1 day I was able to walk 64 feet. My linoleum is 1 foot squares so I retrace my steps in the chair and count them. I get another ivig tomorrow so I hope it helps a lot. I never felt a gradual getting better. My legs immediately felt more normal and I tried walking and I could. I was sooooooo excited. I never feel better after ivig until at least 10 to 14 days after ivig.
Thank you everyone for the responses! I had a great day at physical therapy yesterday when I found out that some of my issues come from not being stretched out. I already feel a HUGE difference and (knock on wood) I haven't had a foot cramp for two days. Might be a coincidence but I am enjoying it. I was told to use the walker so I keep good posture and walk correctly. It isn't a big deal except how the heck do you open doors!?! I was mortified yesterday when I got stuck in a building trying to get out when I couldn't open the door. The door was very heavy and it made me realize I have to figure something out to be independent. Any suggestions?
I had a very vigorous massage today and feel great.A long soak in the hot tub.Bliss.
I read (months ago) that one manufacturer of IgG will provide free IgG if you are diagnosed and your insurance stops abruptly. I think it is Gammux, but you'll have to dig or perhaps some one can chime in here with more info. Or, Google it.
Jennifer said:
I was diagnosed in January with cidp. I had the ivig series of 4 because I ended up in hospital with low sodium. Then I started ivig every 3 weeks. After the second 1 I had 1 day where I could walk 10 feet. I also gained some hand strength. Im in a power wheelchair and can do almost nothing with my arms also. All from cidp. Then nothing until after the 3rd ivig. I was able to walk 60 feet and short distances often. I could lift a gallon of milk. I was able to do the dishes 3 times. Then the insurance stopped my treatment because they didn't c improvement. They were crazy. My Dr. Sent tons of proof and they let me start again. I lost all I gained and my pain got worse. I've had 2 ivig again and 1 day I was able to walk 64 feet. My linoleum is 1 foot squares so I retrace my steps in the chair and count them. I get another ivig tomorrow so I hope it helps a lot. I never felt a gradual getting better. My legs immediately felt more normal and I tried walking and I could. I was sooooooo excited. I never feel better after ivig until at least 10 to 14 days after ivig.