I guess you would have to say I have almost all the symptoms for CIDP. I will start from the bottom. The mussels in my toes are completely gone. I have no feeling in my legs and feet from just below the kneees.I get weekness in my legs and knees that can cause me to fall. the rest of my legs are greatly reduced in their feeling. I have no reflexs in my knees. My ring and pinky fingers have almost no feeling and often the rest feel like the are going to sleep. My arms get extremly week, if I hold a phone to my ears for more than about 5 minutes, they feel like I put them thru a heavy wieghtlifting workout. My bladder no longer empties completely (even with medication) resulting in frequent UTIs. Until my bladder is copletely full I can not tell that I have to use the bathroom. I am constantly battling constipation and not knowing when I have to go. My blood pressure sometimes falls (it is usally on the low side) and cause me to go down when I get up and walk (mostly from a lying position and sometimes while walking). From time to time I start choking for no apparent reason. My eyes do not adjust well to changing light conditions and bright lights (such as midday sunlight) are almost blinding. I can not go out side when the sun is shining without sunglasses. They also do not dilate together resulting in blurred vision. In addition I can only walk (on a good day) about 3/4 of a mile, less if it is hot. I am also very sensitive to temperature. I begin to shiver if the temp. gets down to around 70 and sweat like crazy over 85. I also have times when my hands are ice cold to the touch, but I am hot and sweaty on the rest of my body. In spite of all of this, I feel lucky to have CIDP as apposed fo some of the other things this could have been(cancer or MS). At least with this and propper treatment, I will be around for a long time in a livable condition for my loving wife and children. I firmly beleive with faith in God, medication, propper care and the love and help of my family my life will be a long happy one!
jeffrey said:
I guess you would have to say I have almost all the symptoms for CIDP. I will start from the bottom. The musssles in my toesare completely gone. I have no feeling in my legs and feet from just below the kneees.I get weekness jn my legs and knees that can cause me to fall. the rest of my legs are greatly reduced in their feeling. My ring and pinky fingers have almost no feeling and the rest feel like the are going to sleep often. My arms get extremly week, if i hold them a phone to my ears for more than about 5 minutes, they feel like I put a heavy wieghtlifting workout. My bladder no longer empties completely (even with medication) resulting in frequent UTIs. Until my bladder is copletely full I can not tell that I have to use the bathroom. I am constantly battling constipation and not knowing when I have to go. My blood pressure sometimes falls and cause me to go down when I get up and walk (mostly from a lying position and sometimes while walking). From time to time I start choking for no apparent reason. My eyes do not adjust well to changing light conditions and bright lights (such as midday sunlight) are almost blinding. They also do not dilate together. In addition I can walk (on a good day) about 3/4 of a mile, less if it is hot. I am also very sensitive to temperature. I begin to shiver if the temp. gets down to around 70 and sweat like crazy over 85. I also have times when my hands are ice cold to the touch, but I am hot and sweaty on the rest of my body. In spite of all of this, I feel lucky to have CIDP as apposed fo some of the other things this could have been(cancer or MS). At least with this and propper treatment, I will be around for a long time in a livable condition for my loving wife and children. I firmly beleive with faith in God, medication, propper care and the love and help of my family this will all come to be.
I have to admire your resilency. Sometimes I just wish God would take me and get it over with.
The trick is to relize that it could be a lot worse. I do not know if you have ever looked at some of the other conditions with similar symptoms, most of them are uncontrollable and allmost allways end in a horrable end. Just keep the faith. I hope you are not going thru this alone. Honestly you are not, remember the rest of us are there for yopu too, and we all keep each other in our prayers.
JanaC said:
jeffrey said:I guess you would have to say I have almost all the symptoms for CIDP. I will start from the bottom. The musssles in my toesare completely gone. I have no feeling in my legs and feet from just below the kneees.I get weekness jn my legs and knees that can cause me to fall. the rest of my legs are greatly reduced in their feeling. My ring and pinky fingers have almost no feeling and the rest feel like the are going to sleep often. My arms get extremly week, if i hold them a phone to my ears for more than about 5 minutes, they feel like I put a heavy wieghtlifting workout. My bladder no longer empties completely (even with medication) resulting in frequent UTIs. Until my bladder is copletely full I can not tell that I have to use the bathroom. I am constantly battling constipation and not knowing when I have to go. My blood pressure sometimes falls and cause me to go down when I get up and walk (mostly from a lying position and sometimes while walking). From time to time I start choking for no apparent reason. My eyes do not adjust well to changing light conditions and bright lights (such as midday sunlight) are almost blinding. They also do not dilate together. In addition I can walk (on a good day) about 3/4 of a mile, less if it is hot. I am also very sensitive to temperature. I begin to shiver if the temp. gets down to around 70 and sweat like crazy over 85. I also have times when my hands are ice cold to the touch, but I am hot and sweaty on the rest of my body. In spite of all of this, I feel lucky to have CIDP as apposed fo some of the other things this could have been(cancer or MS). At least with this and propper treatment, I will be around for a long time in a livable condition for my loving wife and children. I firmly beleive with faith in God, medication, propper care and the love and help of my family this will all come to be.
I have to admire your resilency. Sometimes I just wish God would take me and get it over with.
Not alone. My husband helps as much as he can. But he can't truly understand what its like. Even though he sees it every day he doesn't live it. I know it could be a lot worse, but I so want my life back or at least as much as I can get. It just takes so long to get the treatment to start turning this around. Thanks for your support. I'm feeling much better today. Relatively speaking of course!
Thank you all for your stories and great support. I am not so good about summarizing everything. Is there anybody, that can say that they went from being totally immobile to walking and able to use the hands etc. again. How long did it take to recover? What are the main disabilities that we have to live with ?
Thank you all for you kind help and support!
I have actually had three episodes in which I was hospitalized, unable to walk, totally immobile. On two of the occasions, I was also losing strength in my arms as well, to the point that it was difficult to feed or shave myself. Fortunately, I am one of the people for whom IVIG works wonders. In each case, the IVIG got me back on my feet again. I never really regained all my strength, but I am able to do most normal activities.
Because of these experiences, my neurologist put me on a regular schedule of IVIG, as a preventive measure. He explained that when I had a really severe relapse, like those, it takes longer to recover, and you might have permanent loss of strength. So far, it has worked well, and I have not experienced that complete weakness again. I doubt if I will ever get all my strength back, but it is lack of endurance (fatigue) that really bothers me. But, I am learning to live with it.
Well for me I believe it started in 1980 when I was walking down the street and my legs just seemed to give out. After that I didn't think I had a problem until I developed a drop left foot in 1995. That year I had two EMG's and after the second one I thought I was getting better. In 2007 I had a stroke which put me out of commission for awhile and also left my left hand partially screwed up so I can no longer play my guitar, oh well. I assumed when you said disabilities you meant just with CIDP. Gary
I guess its sometimes hard to define if the disabilities and symptoms are all CIDP. For me it's all still new and I rather want to deny everything, and than close my eyes, wake up and say it was a bad dream. I don't know if I got so bad because of the lack of care, or the severity of CIDP. I believe IVIG is my answer too! By the end of June I will be one year on it. I went from having to be transfered to be able to transfer in and out of the wheel chair. I can walk with a walker a few feet and I am hoping to change over to some canes. I would love to feel my feet walking again. However I like to be better prepared for the future, as I have to travel long ways to see real medical care. It really helps a lot to hear from all of you that there is progress and also ways to learn to live with it.
Hi your hand and foot thing sound like it could be Raynaud’s phenomenon it’s an auto immunie thing, it’s just one symptom there’s another version that’s more symptoms called Raynaud’s disease… I know because I have always had Raynaud’s phenomenon t. I use a heater at my desk everyday of the year to keep them from getting cold. If there no ac and it’s warm I don’t need it but otherwise they get numb. Had this since I was a kid and I’m 41 now and now i show signs I may have CIDP. I’ll be at the neuro tomorrow,. Just wanted to mention it just in case you never heard of it.
Audrey said:
Thinking back…I started showing symptoms in 1995. I went to several doctors for numb hands and feet, that were in extreme pain. People don’t understand that concept…but it exists. They found nothing. In 1998 I saw a neurologist who thought I might have MS, but I didn’t. Even before I got the flu in Nov. 2000, I was sitting in front of the wall heater with it cranked on HIGH to try to make my feet feel better because when they go numb, they turn freezing cold from the inside out with a burning feeling, and pins and needle. It feels like I have dry, crackly, fall leaves stuck between my toes. I tell people my feet have a burning,crunchy bee stinging, freezin’ thannnnng going on. The same goes for my hands. Anyway…after reading all the posts today (and last night) I truly feel this started about 6 years prior to me coming down with GBS & then being diagnosed with CIDP in 2001.
My symptoms first started 7 years ago when I was pregnant with my second child. I'd had a cold and was weak, but I noticed that my right hand didn't have the strength to hold a dish I was putting into the oven. This weakness didn't go away, and through the months of my pregnancy it progressed to where neither of my hands had any function. I was a classroom teacher and had to have students write for me because I couldn't hold a pen.
My OB and I thought it was simply carpal tunnel brought on by pregnancy (a symptom I didn't know was associated with some pregnancies) and that it should go away after delivery. It did. Until about a year later when I started back on birth control pills (sorry for such personal information). My symptoms began to gradually come back. Much slower than the first time, and more on my right hand and left foot, but coming back just the same.
I was sent to a hand surgeon to discuss carpal tunnel surgery, to which he quickly said to me..."oh no. That's way more than Carpal Tunnel" and sent me to a neurologist. My neurologist discussed with me the many possibilities that could be associated with my symptoms and laid out a plan for testing to work our way through that list. It should be noted that the neurologist, when noting I couldn't lift my hand but could hold it up if given a boost, said, "That's just bizzarre!"
After the testing, we landed on CIDP, even though I present a bit differently than typical (though he did discuss the fact that everyone is different with this disease and that not much is known about it, relatively speaking). We decided prednisone/steroids were not a great long term decision for treatment, and decided (dependent on insurance) to try IVIG. But first, he insisted a lumbar puncture be performed as a final test before IVIG as a safety precaution. Which also meant a brain MRI first (I'd already had MRI on other areas during our initial testing). My doctor said we could do a nerve biopsy to further confirm the diagnosis, but that the risk associated with that process might not be worth the benefit. It would be just as easy to start IVIG and confirm diagnosis based on my response to the treatment.
That all took several months, then I started my IVIG in February of 2008. I recieve 5 days of IVIG at about 3 hours a day, every 4 weeks (sorry I don't know the actual doses as some of you do as it's changed based on my weight). I responded very well, and continue to do so. Over the years since, I've developed some additional symptoms during that "3rd week" and during times of stress, but the IVIG seems to bring me back to "normal*" with all but numbness in the toes of my left foot (which we've wondered is due to something else).
*normal for me is that my numbness goes away and I have almost all control over my hands, but I am ALWAYS tired beyond belief.
We did try to back off of the IVIG by 20% after the first 6 months of treatment, but that did not work for me. No remission for this girl. But, I consider myself lucky that I have a treatment that works and that I have a good neurologist (as it seems is not easy).
That's my story, so far. Thanks for all the support you all give me!
Katie
thank you all for your help and support. it has been a few months and we have a few more members. i am still trying to figgure out how everything started and what are the first symptoms to be aware to send new people in to the right direction, before they become so disabled like some of us, because we did not get the propper medical attention in time. i am also happy to say i am still making progress and learning now to walk steps again :)
I loved your statement "I refuse to be treated for something that has no cure"; and, this is the conclusion that I reached last year after the third unsuccessful round of IVIG and first round of Cellcept. I am done with being the medical guinea pig!
Having CIDP, for me, was actually a blessing in disguise. I was approved for SSDI on my initial application, my employer had a great LTD policy that pays me 66 2/3 of my salary until age 62; and, I got to keep all of my employer medical, life, and dental insurance benefits. I am a single parent with two special needs children--one has Asperger's Syndrome and the other is Bipolar so this disease has afforded me the opportunity to be at home with them when they need me the most.
I'm 38 and while this is certainly not the way that I planned on living my life I am SO THANKFUL and GRATEFUL for my unexpected life.
Audrey said:
We were packing our moving truck to head from Federal Way, WA back to California where I was raised, when all of a sudden I found I had the flu. The kind were it is coming out both ends. It was bad.
On 12/23/2000 while walking the neighborhood looking at Christmas lights, I started noticing I was having a hard time with my ankles. I felt weird. As the weeks progressed....so did my symptoms. by 12/30/00 I has severe back pain, my legs were getting weak, I heard synthesized sounds when cars drove by, every sound was extreme, my hands and feet were in extreme pain as well. It felt like dry ice was burning me from the inside out. Every time I touched something I felt like I was being stung by millions of bees, and I was having a hard time walking and lifting my arms, although I felt like I had to constantly go, it was hard to go to the bathroom. I would have gone to the doctor, but did not have medical insurance.
On Jan. 2, 2001.... the day I was to start my new job, I got in the shower and could not lift my arms to wash my hair. This was at 8:30 am. I got out and yelled to my boyfriend to get me to the hospital ASAP. By the time he got me to the hospital, my parents were there waiting. I was rushed back where they did an array of tests one being a lumbar….spinal. By 10:30 am I was completely paralyzed. My spinal came back with high protein. I had Guillain-Barre Syndrome. No one in my family had ever heard of it.
I was in the hospital completely paralyzed for 8 days. I had IVIg for 5 days & a plasma exchange. I had a catheter, and I was on oxygen. I had a hard time swallowing, my speech was gone, my breathing was getting worse. There was talk of me being in a rehab facility for 4 months, they were going to put a shunt in my chest ….it was scary.
After 8 days of being in the hospital, I was kicked out due to no medical insurance. I did not qualify for state aid because I was not a legal resident of California yet. I was sent home with month's worth of in home nurse's visits.
My parents took my children in (for a year), bought me a used wheelchair, and a walker, and they started making phone calls to see if they could get me help. Finally, after 1 week of being in extreme pain, and being couch ridden, my dad took me back to the hospital. A woman came in the room with medi-cal papers to fill out so I could emergency state ins.
But....I was sent back home.
Long story short, by Feb, 2001, I had a nurse come to my home to help me 3x a week. No rehab, and no shunt. I started to progress, and regained my walking ability on my own by April. In June of 2001, I regressed. I went to see a neurologist. He did a bunch more testing…. he concluded I has CIDP.
I was finally approved in 2002 for physical, speech and occupational therapy for my GBS (How's that for state insurance? It had already been a year and my GBS was now CIDP…MORANS!).
But, because my parents had my children living with them, I lost my medical insurance through the state, so I only went to physical therapy 1 time. And before my ins. stopped, my neurologist put me on Neurontin, which I quickly stopped due to extreme side effects. Life sucked!! I started to self medicate with alcohol and drugs. Of course they numbed my pain, gave me energy, and helped me, but they also started me down a path of self destruction. It took me 2.5 years to figure out that numbing myself was making my CIDP worse.
Now, 11 years later…..although I have amazing medical insurance these days….I refuse to be treated for something that has no cure. Why? Maybe it is a sense of false hope combined with not wanting to put more drugs into my system,
Yes there are things to help ease the process out there, but from my experience, they only work for awhile. I have learned to deal with the pain on my own, and take each day as it comes. I do take Tylenol 3 for extreme pain, that my doc prescribed, but will not take anything stronger. When I have "Lay Low Days" (like I did this weekend, and this morning) I just kick back and enjoy life. Warm showers work, staying covered with socks, sweat pants, hoodies, and sometimes gloves help. I have learned to become resilient to the pain and have concocted my own coping strategies that work for me.
Because of my bad experience with the doctors in San Diego (I moved back up to the Pacific NW in late 2003) I am afraid of being shut down again. I told myself if things become extreme, I would head to the doctor right away. There have been some close calls, but I just wait them out.
On a daily basis since 2000, I do have the vibration sensations, burning feeling, pins and needles thing going on in my right foot, hand, and face. This past weekend it is my both sides of my body, with all of the above, and weakness in my legs and arms, my speech has been off, and I have had the feeling of urgency to use the bathroom, yet nothing happens. Sleeping has been a pain in my butt, because of the pain.
With the pain and symptoms arising again this weekend, I felt the need to reach out and find people like me. That is when I came across this website. After reading about everyone's journey's, their ordeals, successes, or lack thereof with various treatments, it seems as if the medical community has come a bit farther in understanding CIDP since I was first diagnosed in 2001. With that, I have called my doctor, and asked to be seen so I can weigh my options once again. :)
The overwhelmed feeling comes and goes for me. I have learned to not let it take over , like I did in my past. I took up photography to redirect my thoughts. I look at life as a gift, and am very thankful that I am able to be here...right now....sharing my story with you, as well as learn from others about their experience.
Anyway.....If there are typos in this, I am sorry. Please read between the lines. I had to hurry. I have to go to work for a few hours this morning.