I am curious to know what were the beginning symptoms that were experienced before you were diagnosed with CIDP. I know that everyone is different and probably had many different issues, but I am still in the testing phase waiting for a skin biopsy to come back but all my other tests have been negative. Any response would be greatly appreciated. Thank you.
This is an interesting question. The symptoms which drove me to see a neurologist were extreme weakness in both legs, so bad that I could barely stand up by the time I was referred to the neurologist.
However, for about a year before that I had been experiencing pain, numbness and tingling in my lower legs and feet. I was diagnosed with a pinched nerve, but none of the usual treatments helped. I now realize that these were almost certainly symptoms of the CIDP. I still have a little bit of pain all the time, some numbness and tingling, but nothing too bad.
BUT, there's more: for several years before that I had been complaining to my doctor about fatigue and lack of energy. He suspected low thyroid function, but of course tests showed my thyroid was normal. There were other things that I never mentioned to my doctor because they seemed too vague, but I was also noticing that I was becoming clumsy: I tripped a lot, had trouble with balance, seemed to drop things more than I used to. I now know that tripping is sometimes caused by foot drop, which is a symptom of CIDP.
So, I now think that the CIDP was "brewing" in me for several years. The first symptoms were not very dramatic or clear, but looking back I think they were present for a number of years before the CIDP became a real problem.
My first symptom I noticed was my right foot felt numb, almost like it was slightly asleep. No pain, just numb feeling. Then the numbness moved to my ankle too. At first I was not alarmed, I thought I had pinched a nerve or something. My regular gp ran a neck Xray and some blood tests like Lymes, etc. All normal. I took it upon myself to see a neurologist. She thought of CIDP in my first visit...by now my hands had a sensation of burning on the tops and I was dropping some smaller things when I handled them and the tingling was getting worse in my right foot and now I felt it a little bit in my left foot. Other than that I had no other symptoms. It took a month or so to get my diagnosis. In that time I noticed that my foot tripped a bit while walking (almost like I forgot to lift my foot all the way off the ground). I also noticed my legs ached when I tried to climb stairs and I was exhausted in just a short walk through the skyway (I use to be able to walk for long distances without getting winded). I knew at this point something was really wrong and I started to get scared. After my Lumbar Punch they got elevated protein in the lumbar fluid...this pretty much cinched her hunch and she gave me the diagnosis of CIDP (I also had abnormal waves on my EMG and Nerve Conduction Study in both legs showing pattern of moderate demyelination). I never had the nerve biopsy. She wanted to do one but I said no since I heard that after the biopsy I would have permanent numbness on that side of my foot. Sounds like you had the skin biopsy instead of the nerve biopsy...this is what I wanted to have done if my LP did not show elevated protein. We never had to do it though since I had elevated protein. So we started Pred 40 mg at first for treatment. After a few weeks we stopped the Pred - I felt horrible on that stuff! We started IVIG and I have been on IVIG ever since every 21 days (for a year now). I really don't have too many bothersome symptoms as long as I stay at every 21 days. I can tell when I am due for IVIG as my feet start to feel funny, my knees start to feel swollen and sore, I can't climb stairs as easily and I get a creepy-crawly sensation in my feet and legs at night. My neurologist said that I have a good prognosis at staying mild in nature since I was diagnosed within 5 months of the first symptom. Not much damage has occured to my nerves yet. I just hope the IVIG keeps working on me for years to come. Good luck.
Mine started 18 months ago when I notice I was losing strength in my left foot to stand on my left toes or walk on my left heal. It continued until I saw my GP and complained about that. By that time, and the time week or two waiting to see a neuro, I developed slight foot drop of the left foot. No pain. the neuro examined me, learned that I had type II diabetes 8 years before (but ignored that I had dropped 190 pounds and had not been a diabetic since.) He gave me and EMG test which showed poor electrical flow to my left foot and a significant reduction in flow to my right foot. My right foot was still working fine though. He diagnosed me with peripheral neropathy and prescibed a foot brace to keep the foot held at 90 degrees so I wouldn't trip on my toes. Time passed. My sense of balance was deteriorating. Six months later I had lost so much leg strength that getting up stairs was a very, very big deal. I saw my GP and went to physical therapy. After therapy, last summer, I was going to they gym 2-3 times a week doing leg work. Leg presses, curls, etc. This did increase my leg strength some. However, by Novemeber I noticed I was getting weaker again. I had been losing weight since March 2011 about 3-5 pounds a month. My wife commented I had lost my butt. My sense of balance continued to get worse during this time so that walking with a cane, even in the house was required or I would fall over. I still do "wall walking" or touching whatever is near when I move around the house or at work without a cane. In Jan 2012 I went back to my GP about this. I was referred to a different neuro two weeks later. During the exam, he noticed that I that small parts of the muscles in my biceps were pulsing. I hadn't noticed that. He felt I had CIDP. He ordered an EMG and lumbar tap. The EMG confirmed the sheath deterioration. The spinal fluid from the tap showed my protien level in the fluid was nearly twice normal. Those things confirmed his diagnosis. He has ordered IVIG as of Jan 20 and after conversations with my insurance company again today, they still have not made a decision to approve or disapprove the treatment. Luckily, I'm pain free and mobile. Walking more than a city block requires me to sit and rest. No running possible due to the drop foot. In the past two weeks, an occasional symptom which began in January became permanent. My diaphram no longer works. The lung function test this week proved my lungs are fine and I can breath great. I just doesn't test exertion or the ability to cough up things were I to have a bad cold. The lack of ability to cough well give me fear of a getting a cold, choking and dying. I can no longer sleep on my back because I can't get in enough air. Happily though, I can sleep on my side. Other than the frustration of the lack of fast resolution by my insurance company and continued effort to get a device to help me breath when I sleep or help if I get a cold, I'm happy, healthy, and in love with my dear bride of nearly 40 years. I hope all is going well with each of you and that you find happiness everyday! Whew. Was that long or what!
I was experiencing pain, numbness, pins and needles, and tingling in my feet and legs for about 3 years. I just assumed that I had really bad circulation. Then one night I couldnt feel my legs at all, and during the following weeks I had weakness in my legs and fell while walking up the steps. Finnaly I went my doctor and he orderend and EMG. At my first visit to my Neuro, he said he thinks I have CIDP. Had a series of blood tests and a bone scan after that, and then my Neuro said he is pretty confident that I had CIDP.
My Initial symptoms first appeared about ten years ago when I was at the beach and had a sensation under one of my toes like there was something under it , I reached down and there was nothing there . I went for many years without being diagnosed untill my symptoms got so bad that I insisted my Doctor do soemthing other than Xrays ! was diagnosed Finally last September but only after insisting I be seen by a neurologist to see what was going on . My Neuro was horrified that I had been 'neglected' for so long .
Looking back mine started with numbness in my feet for about a week before i noticed anythng else. I just remember waking up on a Wed. morning feeling tired. Like I was getting a cold or flu. So I just stayed in bed. That lasted Wed., Thurs. & Fril. On Friday I told my husband that if I was not better my Mon. that I would need to go to the doctor because although I did not have any cold or ful symtoms, I just kept getting weaker. Saturday I fell, but I could still get up. On Sun. I fell and could no longer pull myself up because my legs were parayzed & my arms no longer had enough strength to pull my up. I slowly crawled to my phone & called my daughter since my husband was not home at the time. She took me directly to the emergency room where they diagnosed my with Guillain Barre. CIDP came 3 months later when I had a relapse.
Good luck to all who are suffering with this diagnosis.
Carol
hi Joe D, hate to bother you, but you are the only person I have seen talk about breathing. Can you tell me how youknow your diaphram isn’t working? Does it feel like you have a tight band around the top of your stomach and can’t get a deep breath? i have been feeling. This for a very long time and my neuro says it coukd be CIDP, which I have, but she isn’t sure. Can you p,ease give me more details about your breathing…thanks, Jo
Joe D said:
Mine started 18 months ago when I notice I was losing strength in my left foot to stand on my left toes or walk on my left heal. It continued until I saw my GP and complained about that. By that time, and the time week or two waiting to see a neuro, I developed slight foot drop of the left foot. No pain. the neuro examined me, learned that I had type II diabetes 8 years before (but ignored that I had dropped 190 pounds and had not been a diabetic since.) He gave me and EMG test which showed poor electrical flow to my left foot and a significant reduction in flow to my right foot. My right foot was still working fine though. He diagnosed me with peripheral neropathy and prescibed a foot brace to keep the foot held at 90 degrees so I wouldn’t trip on my toes. Time passed. My sense of balance was deteriorating. Six months later I had lost so much leg strength that getting up stairs was a very, very big deal. I saw my GP and went to physical therapy. After therapy, last summer, I was going to they gym 2-3 times a week doing leg work. Leg presses, curls, etc. This did increase my leg strength some. However, by Novemeber I noticed I was getting weaker again. I had been losing weight since March 2011 about 3-5 pounds a month. My wife commented I had lost my butt. My sense of balance continued to get worse during this time so that walking with a cane, even in the house was required or I would fall over. I still do “wall walking” or touching whatever is near when I move around the house or at work without a cane. In Jan 2012 I went back to my GP about this. I was referred to a different neuro two weeks later. During the exam, he noticed that I that small parts of the muscles in my biceps were pulsing. I hadn’t noticed that. He felt I had CIDP. He ordered an EMG and lumbar tap. The EMG confirmed the sheath deterioration. The spinal fluid from the tap showed my protien level in the fluid was nearly twice normal. Those things confirmed his diagnosis. He has ordered IVIG as of Jan 20 and after conversations with my insurance company again today, they still have not made a decision to approve or disapprove the treatment. Luckily, I’m pain free and mobile. Walking more than a city block requires me to sit and rest. No running possible due to the drop foot. In the past two weeks, an occasional symptom which began in January became permanent. My diaphram no longer works. The lung function test this week proved my lungs are fine and I can breath great. I just doesn’t test exertion or the ability to cough up things were I to have a bad cold. The lack of ability to cough well give me fear of a getting a cold, choking and dying. I can no longer sleep on my back because I can’t get in enough air. Happily though, I can sleep on my side. Other than the frustration of the lack of fast resolution by my insurance company and continued effort to get a device to help me breath when I sleep or help if I get a cold, I’m happy, healthy, and in love with my dear bride of nearly 40 years. I hope all is going well with each of you and that you find happiness everyday! Whew. Was that long or what!
Hi jh…here is my story. I’ve had Crohns disease since my early twenties and then had some gynecological problems as well. I was extremely close to my mother and after she passed away, my body seemed to want to follow her. Everything broke. I had to have a hysterectomy, a bowel resection (due to Crohns) and then an adhesion surgery all in one year. While all this was going on, I had very low iron and B12. When you have Crohns, it is difficult to absorb vitamins and nutrients through your intestines the way everyone else does. My B12 went very low and the injections were unavailable for about four months. The numbness and burning began in my left index figure and left big toe. It spread to all my toes and fingers and then to my other foot and hand. My feet started to feel like cement blocks on the end of my shaky, weak legs. Since you can get peripheral neuropothy from B12 defficiency, my GP was attributing the problems to that. He gave me B12 twice per week and kept testing my blood. As the B12 levels improved, she expected the numbness to improve as well. Not only did it fail to improves, but I got weaker and started to walk with a cane. Since I have back problems, she sent me to my orthopedist. He examined me, hit my knees with the little hammer and said “you have absolutely no reflexes”. He told me I needed a neurologist. My first neurologist started doing EMGs of upper and lower extremities. He saw demylination right away but he didn’t know why it was happening. I am a researcher so I started to research my case. When I read about Guillain Barre, I knew in my gut that it fit me. The only thing that did not fit was the sudden onset of symptoms. Then I found CIDP and that was it. i read what people wrote and I just knew it was what I had. i read that it was an autoimmune illness and I already had one, the Crohns, that made me more suseptible to others. When I told my first neuro, he insisted that CIDP had to be symmetric and mine was not. I told him that I read that was no longer the case. He wouldn’t listen or educate himself so we went to the best MS doctor at Stony Brook, a well respected hospital where my husband works as an MRI tech. This doctoe sent me for new EMGs with her CIDP specialist and the woman diagnosed me the moment she began the nerve conduction part of the test. Just to mention also…my lumbar puncture came back normal. My doctor said that happens because the extra protein some people have is from tge myelin shedding. If you don’t take the puncture at the right time, it will come up negative. I just had my secomd round of IVIg and I have the feeling back in all my extremities. Still have back pain and feel weak, but I walk without a cane and I drove my car a short distance for the first time in six months. Looking back, I too remember small things that were signs that I didn’t see at the time. I remember trying to run after my dog and my right leg seizing up so that I fell. I also remember feeling weakness in my legs (I used to walk and run every day with my dogs) and hacong problems spraying things using my index fingers (like I couldn’t push the pump on my hairspray bottle). I pray that you will have answers soon. The not knowing is terrifying, but we are all here for you any time. Please keep us posted even if it turns put to be something else. Joann
The very first symptom which made me go to see my doctor, and which ultimately led to a diagnosis of CIDP many months later, was numbness ( 'pins and needles' ) in the feet and ankles. But looking back, I can remember earlier incidences of fatigue, numbness in the fingers, weakness in the legs and tripping; so I think CIDP might have been sneaking up on me for years.
I have to agree with most of the above posts..just various pins n needles in arms and legs, followed by many visits to my Dr, untill you actually get a diagnosis...but I guess there may be many people who have similar symptoms and it turns out to be something completely different.
@ Doggymamma - Diapharam Failure
First I want to assure everyone, if this ever happens to you, day to day life is fine. You can sit and breathe just fine. No panic about lack of air.
Initially, before it was in total failure, I noticed that sometimes if I exerted my self, I would run out of breath. When I tried to take a deep breath, sometimes, I couldn't expand the lungs and get that really deep breath. Sometimes yes three times, once no. The breath felt like it stopped right at my rib cage. Sometimes at night when I lay down on my back, I would find myself gasping for breath after a minute or two. I would had to take the deepest breaths that I could and I still wasn't getting enough oxygen while laying down. I had to either sit up or lay on my side. Another symptom was that my ability to cough or sneeze went from jet propelled high volume to a whimpy little hack of air. It's difficult the clear my throat. Sneezes that would have once been legend are now pitiful little achoos. The diaphram is what pulls back, give you the extra air volume and then slams forward and forces all that air out. So. Poor cough/sneeze. No laying on the back. No exertion. For the last part I'm now quailified to be a beach bum. So see, I did get something out of CIDP!
@jh Ijust wanted to add this. Although none of us are doctors, we are all qualified to tell you how the disease feels. There may be small differences and severity of symptoms is different, but the basic symptoms are the same: pins and needles, burning, numbness in feet (in some it moves to legs too), hands (some in arms too), weakness in legs and sometimes arms, difficulty walking, tripping over feet or dragging a foot, most of us have a lot of difficulty going up stairs, some have trouble with their bowels, back pain. I forgot to put that I can pretty much tell how I am by just my left index figure,which is where it started. I will feel tired one day and will wake up in the middle of the night with pain like someone is holding that finger in a fire. Then, the rest of my body follows. As for tests, I think I am correct (Please feel free to correct me if I getthis wrong)we ALL have shown demylination of the nerves during an EMG (i think you must have this to get a CiDP Dx), but some of our lumbar punctures come back normal (mine), I believe a nerve biopsy has to also come back positive for demylination.
So, what I really want to say after all that is this: I am not saying that you should insist on a Dx that is wrong for you. I AM saying that while my first EMG test came back that the myelin on my nerves was damaged, this dr insisted I did not have CIDP. I KNEW without a doubt from extensive research that I did have it. So, I went to another dr, who was an MS expert so I could rule that out. I also knew that the dr who did the EMG was a recognized expert in CIDP. Without me saying a word, she said “I don’t think you have MS but you may have CIDP”. She sent me for another EMG and BAM, that dr, an expert in CIDP, says within 5 minutes of the test that I have it. So do your homework and be your own advocate. It is important to get treatment within 18 months of the onset of this disease, so we don’t have time to play around with doctors who don’t have experience with the disease. Good luck. Jo
@ JoeD, thanks so much for your time and for both messages. Some of what you wrote sound familiar but some doesn’t. The parts about the “air stopping at your rib cage, can’t take a deep breath, laying on your back” really rong a bell. But I don’t feel out of breath after exertion (I think because I am breathing in shallow breaths) and I just sneezed 2x and they were doozies! Can also cough pretty well. Did your dr determine your diaphragm wasn’t working by some test or by your symptoms? I know you had a lung test and they came out okay, but is there any other test or deduction that made him say this? Should I see a pulmomologist? Thanks, jo
Hi Jo,
I also have CIDP and sometimes have issues getting a big breath of air. Otherwise fine in all other breathing. I think my problem stems from anxiety attacks. I noticed it happens when I am having a bad day or upset over symptoms. I am not suggesting yours is also anxiety but it is something to pay attention to. See if the problem only happens at certain times and then resolves for other times. Mine has to be anxiety because I can go days and days without experiencing the problem. Also once I can't get that 'big' breath that my body is craving it sets off more anxiety making it even worse...i obsess about getting that big breath of air and it seems to get even harder. I notice if I get involved in something I all the sudden forget the anxiety and all the sudden the big breath comes. But then the cycle starts over again and again. It can last for hours sometimes. But it always resolves. Just a thought for you. Good luck.
I’no doctor of course. Just talking about my symptoms and belief. No dagnosis that the diaphragm is out. Just a belief. Sleep study next week may tell me more.
A pulmonary test only tests the lungs in a sitting position. O2 level,ability to process o2 and exhale capability . Mine was fine at that. Although I will ad that my exhale can’t go for long like it could when I could fill the lungs fully. Still I could exhale enough to pass the test with flying colors.
Anxiety I understand. Before I was smart enough to roll over on my side I had near painic at breathing while lying in bed on my back trying to go to sleep? Last sat nite I woke up at 3am gasping for air. I thought I was going to have to midge the wife for a 911 call before I suffocated. I sat up kept breathing and calked myself down. Worked out fine
Thanks for the advice Joe & Jane. I think it’s possible that it could be anxiety. Mine comes and goes also. I seem to have the problem more when I am alone, I just thought I would tend to pay more attention when I am still. The breathing is often accompanied by some discomfort very high in my stomach. I had this way before any of my CIDP symptoms because I remember discussing with my Crohns dr amd he said no one he knew had trouble breathing with Crohns. I took a valium today but that didn’t help either. I just don’t know. JoeD, did it come on slowly where you didn’t have the problem all the time? I just don’t know but I have had it for a long time and keep wondering what the hell it is. Of course when I read Joe’s post, I thought uh oh, was that another shoe dropping? Can anyone blame us for being nervous wrecks! Our nerves are shot, literally!
I find that some of the post describe some of I been experiencing on me.
I remember when I was in high school many years ago my GP doctor found something examine me. Of course I quickly dismiss whatever he might of found those many years ago.
I started falling down as my first memory back then too.
I then remember not able to stand like in lines I would not be able to for long.time pass I’m 20,:
And a ortho discovers I have collapses tells me I’ll be in a wheel chair by the time I’m 40.
I didn’t brlive, I was too young to understand.
Now apx another 20 years later having back problems, still falling down.
I have several accidents nothing big time, just injuring my knee or back, etc.
Then I get worse as time goes on. I have skin cancer. Heart attack, COPD,
Then I drop oxygen tank on my foot, it heals, but I haven’t today been able to move my toes or Ben them. Two years I tell my
My GP he doesn’t listen. I’ve gone to physical therapy etc for other things.
After going in & out of er for breathing and pain etc.
I am sent to a Neuro doctor 5min or less just looks at me says you got drop foot! What is that?
Then does a few weeks later EMG.
Tells me I have serve sensory pholyneuropathy.
What is that?
Been searching since
I. Found this web site. I keep wondering about things cause I’m still falling, and burning on my feet, and the pulling or stretching of my legs .
Lung doctor is now wanting me to go to Narrows. Thinks this is causing breathing problems.
I did go to Barrows Neuro hospital . MAD clinic.
Yesterday I had another EMG / VIN. They haven’tfig out yet, yesterday one doctor is confuse because I can’t feel the needles, nothing??
I can feel skin.
They said something is licking in to make my mules work,
Weird huh. I’m in limbo
Wow Ruthie. Drop foot: An example of mine. If I sit in a chair and am barefooted, and lift my left foot, I can not keep the foot at 90 degrees to my leg. It's just dangles down. Limp, unresponsive. No control, like it's not part of my body. I wear a brace to keep my foot up.
Falling, lack of balance, I understand. I've walked around like I've had my limit of alcohol, based on how I reel back and forth as I walk down the hall. Not having drank anything of course. As I understand it, that's the sensory part.
it will all work out Ruthie.
Hugs
Hi Everyone. I'm new here, and have just been diagnosed with CIDP this week. My symptons were pretty much everyone elses.... weakness in lower legs and feet, and difficulty climbing stairs (and tap dancing, which I used to do ALL the time!)... Since nothing hurt at all, it was hard to decide to go to the Dr, and then even harder to get someone's attention. We're waiting to get insurance approval (I hope I don't have any problems---it's AT&T United Health Care), and THEN will start IVIG which is scaring me to death, thinking I'll have to be on this the rest of my life. I function pretty well, especially after starting with a personal trainer and gym work 4 months ago, but have a tendancy to trip (that dropped foot again). Is body temp a sympton? I go all over the place at night and flip my pillow continually to get cooled off. Your postings have been so much help since I'm really really nervous about the future. Thanks again, All!