My first symptom was about 2 1/2 years ago when I noticed difficulty walking up a slight incline coupled with numbness of several years duration. My FP sent me to a neurosurgeon who was baffled by my symptoms coupled with a rather negative MRI. My neurologist then conducted nerve conduction tests confirming that I was not going crazy. After exhaustive bloodwork he hesitatingly offered CIDP as a "probable" dx. IVIG has had little effect. Exercise helps. A visit with a shoe expert has been beneficial. He diagnosed me with a few questions. He told me most of my symptoms and showed me the changes in my feet which the shoes and orthotics will help correct. He works with another local neurologist who has recognized that CIDP pts need help with shoes and orthotics. The shoe expert has been tremendous. I have no pain. The numbness is severe in one foot and moderate in the other.
Thanks for sharing your story with us
After living with numb feet for a couple of years, I complained to my primary care dr. about it. He sent me to the neurologist who ran tests, sent me for a lumbar puncture, and arrived at the CIDP diagnosis. IVIG was the recommended treatment for me but hit a snag…the secondary insurance denied the treatment stating it was experimental/investigational and not medically warranted. Am fighting this but who knows how long the neurologist and insurance co. will be going back and forth. Steroids were mentioned as a possibility but am not sure about getting this treatment. So we wait.
Hello all,
Thanks for all the warm welcomes to the group. I'll try to keep this short.
After a flu shot in Nov 89, I began to get leg weakness around Christmas time. It got worse - I was having trouble with stairs and standing for awhile. I was in the Army at the time and they sent me to PT. I went to a Chiropractor, thinking I had a pinched nerve. They finally sent me to Walter Reed, where I was diagnosed with GBS in Jan 90 and admitted to the hospital. I got plasmapheresis for five days and was out of the hospital in 10 days. The prophetic words of my doc are still with me "your quick recovery could mean that this is CIDP instead of GBS". By July 90 I had been back in the hospital twice for a week of plasmapheresis and they finally changed my dx to CIDP. During one of the hospital stays, they tried IVIG, but it was not effective. During that year, I had about 6 spinal taps and a dozen EMGs to try to figure out what was working. I also had a sural nerve biopsy that confirmed my "demylinating" diagnosis.
I went on steroids with minimal improvement and significant side effects - took forever to taper off of them. I also tried cyclosporin but my white count went too low. I was on a trial of PolyICLC IM injections (treatment for MS), but it didn't work either. Starting in about 1992, I went on plasmapheresis q 4 wks and was pretty stable. In 1994, I tried IVIG again with severe reactions that could not be alleviated with pre/post meds. In 1996, they stopped all treatment to see what would happen and within 2 months I had difficulty walking up stairs and after 4 months I was unable to endure much physical activity at all. I stayed on plasmapheresis until 2007, when I tried IVIG again. The new gamunex was better tolerated and I am still getting monthly IVIG at home. I am interested in trying SubQ IG, but need to work this out with my doctor and insurance company, as I understand that it is not yet officially approved for CIDP.
I get flare-ups when I'm sick or occasionally for no good reason. But, for the most part, I'm blessed to be strong and otherwise healthy. I run and work out and have a physically demanding job. As long as I get my IVIG, I can keep a pretty ordinary schedule and level of activities.
What I've learned is that CIDP is a very different disease for each individual and treatment is also unique. It has been trial and error for me and sometimes I wondered if I would ever find a good treatment. I hope this info will give some encouragement to those who are recently diagnosed. Be your own advocate and don't give up. Also, don't be afraid to try something a second time if things have changed a little.
Thanks for your note about CIDP. Seems everyone’s symptoms are different. I cannot complain but wish I could get my leg strength back like you. My DX came after EMG’s and the sural nerve biopsy and we started the Gammunex as a trial. It just doesnt seem to do anything but I am afraid to stop it -but we have reduced the dose frequency from q3weeks to q6weeks. I think my symptoms started a few weeks after immunizations for my missionary work to Nicaragua. I have lost muscle mass in my calf muscles and try to do specific exercises to keep from losing more mass. I found some shoes that help with the “dorsi-flexion” that I lost. I cannot run and walk with a limp when not wearing the special shoes. My biggest problems occur when I get tired. Did you do a specific exercise to regain your leg strength, weakness and standing or do you feel the IVIG resolved the wthe difficulty with stairs? Thanks for any input, Mike
Tom V said:
Hello all,
Thanks for all the warm welcomes to the group. I'll try to keep this short.
After a flu shot in Nov 89, I began to get leg weakness around Christmas time. It got worse - I was having trouble with stairs and standing for awhile. I was in the Army at the time and they sent me to PT. I went to a Chiropractor, thinking I had a pinched nerve. They finally sent me to Walter Reed, where I was diagnosed with GBS in Jan 90 and admitted to the hospital. I got plasmapheresis for five days and was out of the hospital in 10 days. The prophetic words of my doc are still with me "your quick recovery could mean that this is CIDP instead of GBS". By July 90 I had been back in the hospital twice for a week of plasmapheresis and they finally changed my dx to CIDP. During one of the hospital stays, they tried IVIG, but it was not effective. During that year, I had about 6 spinal taps and a dozen EMGs to try to figure out what was working. I also had a sural nerve biopsy that confirmed my "demylinating" diagnosis.
I went on steroids with minimal improvement and significant side effects - took forever to taper off of them. I also tried cyclosporin but my white count went too low. I was on a trial of PolyICLC IM injections (treatment for MS), but it didn't work either. Starting in about 1992, I went on plasmapheresis q 4 wks and was pretty stable. In 1994, I tried IVIG again with severe reactions that could not be alleviated with pre/post meds. In 1996, they stopped all treatment to see what would happen and within 2 months I had difficulty walking up stairs and after 4 months I was unable to endure much physical activity at all. I stayed on plasmapheresis until 2007, when I tried IVIG again. The new gamunex was better tolerated and I am still getting monthly IVIG at home. I am interested in trying SubQ IG, but need to work this out with my doctor and insurance company, as I understand that it is not yet officially approved for CIDP.
I get flare-ups when I'm sick or occasionally for no good reason. But, for the most part, I'm blessed to be strong and otherwise healthy. I run and work out and have a physically demanding job. As long as I get my IVIG, I can keep a pretty ordinary schedule and level of activities.
What I've learned is that CIDP is a very different disease for each individual and treatment is also unique. It has been trial and error for me and sometimes I wondered if I would ever find a good treatment. I hope this info will give some encouragement to those who are recently diagnosed. Be your own advocate and don't give up. Also, don't be afraid to try something a second time if things have changed a little.
I became ill in December of 2010 and was told I may have MS then after loosing the ability to walk and being in hospital was told i had GBS then in September 2011 was told I have Chronic inflammatory demyelinating polyneuropathy (CIDP). I am still concerned do I have what they say I have! The pain in my legs and hips and neck are terrible and find nothing that makes it better. I had a 5 day round of IVIG in Feb and a set in April. My beaumont neuro doc wants to do another 5 day now but my PCP doc says no and that is really confusing for me. I am going to see a Houston, Texas doc to get a second opinion and see what course of action to take. I fall alot and my feet are numb and tingly. Any opinions? Any advice on what helps for the pain that allows you to still function during the day?
I stopped being able to walk when I was 2. We went to our local gp and he told us that I had to be taken to hospital because he believe that both my hips had become dislocated. I was only 2 so the only symptoms they had was the fact that I couldn’t walk and I cried because of pain. When we got to the hospital they x-rayed my hips and it was fine. We went back to the gp and he found out that I had numbness in my legs. I was referred to a doctor in Fremantle hospital (I live in Perth, Western Australia) and he did a muscle biopsy on the top of my leg. It came back that I had cidp and I have been getting IVIG at princess Margaret hospital every 8 weeks since.
Hello I'm Ruth I can't remember when I first found this site if I wrote anything here or just read the posts mostly?
My joruney is a weird one maybe not too weird, but still different in that I am still learning and don't understand what I have all yet. I don't know how to make this short so forgive me if it is too long of story.
I am 63 years young, and I started having problems when I was younger but I just thought it wasn't nothing and never share anything with no one not even the doctor I saw when I was in high school. He did notice a weakness but I love sports and didn't want to miss anything...besides if I have what I have today then it didn't stop me anyway. But that is begining of me falling down every once in a while, and then couldn't stand in lines waiting way back when I was younger.
Today after almost two years I found I have the reasons probably I had problems back when I was younger just gotten worse since that time.
It all started when I was told Dec 29, 2009 I had COPD, and put on oxygen 7/24. I NEVER SMOKE. lots of things might of cause me to have COPD? OK nothing to do with what you all have going on, but that is what lead me to find out what was going on with me, and things just gotten worse since. I have sever sensory Polynerupathy.
I also have sleep apnea, which I like to forget about...I don't like the breathing machine...it I think makes my copd worse. that is another story as well.
I came down almost every year with skin cancer not the bad type but one that could be if not taken care of. Thank heaven I had it removed since then it seems I get them about the same time every year or they grow that fast.....again not important probably.
I came down with other things like I had heart attack and didn't know it...and then after a while I had chest pains which got me a few years later 2008 a stint in my LAD.
I have sever arthrits the Ortho type..All the doctors around me today think I have RA maybe going on with all the things that I keep having go wrong with me. I have apt with an RA doctor in several months.....I know the blood work my GP has have done doesn't show RA. I a puzzle. I have had so many xrays because of falling down, the doctors just tell me I have degentive dease of my joins. I don't care what they call it!! I have pain everywhere these days...I won't go into it now.
Just my hips are the worse I thought, then I think my knee is then I think my ankle and hands are. That lead me to be on pain med's...nothing more. My GP didn't think anything else could be wrong with me...just arthrits. There isn't too much to do for it. I have had Physical threapy time to time when I could stand it and insurance would pay for it.
I did start complaining to my GP doctor about the pain and I use over the counter stuff...but I have just learn to live with most of the pain today.
I drop one of my oxygen bottles the large size on my foot two years ago and at first the xray didn't show the break, later because I kept complaining to my GP doctor he did an MRI and found the fracture. I am on medicade for now and they won't pay for a brace...so I got one that was too large for me to really use from my doctors office, they had one in left there in the office. I mostly wore a good hard shoe....
This is weird part.....I couldn't feel my toes on my left foot, and I couldn't ben them. At first you think it was the small size break on my foot so did the doctor. But after two years he didn't keep thinking that way....Sent me to orhtopedic, who said he couldn't help me. And all the degentive dease as well he couldn't help me.
I had always back problems since falling so many times and born with the S shape spine doesn't help either.
All together no one look up higher in my back always the lower part....saw the bludging L5 S1 disk, and degentive disk dease etc.
But since my hips keep getting worse and my foot not able to move and deforming now...pointing weird like, and can't see my ankle sometimes and all the swelling going on. Does any of this fit anyone?
OK I probably jump too much around but I had several MRI's this year and higher up on my spine and neck area, and my brain too. They found a Cyst in my brain they think I was born with it....and now the Neuro doctor thinks it could be making my left side weakness...?? So far another PA in a Neruo Sugent office said they couldn't do surgery it was too deep and it wasn't hurting me...so far. It did grow from the first time they found it last year to this year.
I live out in the farm land turn some into tracks of housing where up until this last year you have to drive 10 or more miles to go grocery shopping or any type of shopping, including finding doctors.
So we don't have fancy hospitals like they do in CA or back East....and I have an fp doctor....
Today he doesn't bring up what a neruo doctor he sent me too told US what is wrong with my foot, legs, and hands maybe everywhere. They sensory polyneuropathy
I never heard of your med's before, and it is all new to me. I am wondering if this neruo doctor that I been too knows his stuff? How can he tell me in a written report several pages long with the MRI's, and EMG's? I have this?
Well he told us that I have Sever Sensory Poloyneruphamy now at first my doctor and this neuro doctor thought it was my newly just digose with diabetes2 in June....? I am not that bad either...suppose to eat to fix it.
He try me twice on Gabapentin, but I almost went blind on it, the pharmtist said he probably started me too high. The neuro doctor doesn't understand I am senitive to med's. So my husband speaks up at a visit with this doctor and told him he thought he saw improvement even though I had a reaction....so they (not me) decided to try the lowest dose...the same thing happen. I was then on this other med's simular but even strong...sorry forgot what it was call...right now.
Anyway I have so far nothing but my Hydrocondons 7.5 to help with pain.
What is happening to me....nothing much, I got this diagonses so what.....I never knew there was things you all take or have done until I found this web site.
I am not sure what is going on for sure even reading a few of you here I see that your not sure as well if these treatments work that you have done.
I been trying to fig out some of the breif forms use what they mean as well.....?
I wish I knew what to ask, what to do, or what to say to my doctors.
I was just release before Thanksgiving for a breathing problem turn bad and since where I live you can only stay in a hospital 25days a year under our medicade.
I won't be on medicare until sometime this summer. Yes I am on disability....I fall down too much so the neruo told us that I have to stop falling down. So we bought a use scooter for me. I still can't use it inside the house...we live in a two story house...and I have fallen down the stairs too.
I don't know when I will fall? I have a tiny sharp pain sometimes or nothing at all.
I have canes, walker, and now my scooter. My husband has help me a great deal....
I just wish I knew more about what you all mean by these IV thing you have. How do I find out about it?
And of course how do I find doctors that understand what I have?
Thank you for taking the time to read my post...and please forgive if I mis spell anything.
I talk better then I type.
God Bless us all and all of you.
Ruth