What are your symptoms?

There are many symptoms to CIDP. Many that mimic other autoimmune diseases, in particular, MS. it was originally thought that I had a mess however following an MRI and EMG it was determined that I did not have two significant lesions for a diagnosis of MS. it was originally thought that I had MS however following an MRI and EMG it was determined that I did not have a significant lesions for a diagnosis of MS. I am MS symptomatic and my triggers are stress and fatigue. My symptoms include spacicity, muscle spasms, lower extremity pain, balance and vertigo, foggy brain and problems with cognitive processing, body tremors, slurred speech. Every day is different and tremors, speech and cognitive responses can be initiated without warning in excitible situations. Not much is expanded on with CIDP triggers or symptoms. I would appreciate your feedback.

This is surprisingly complicated to answer. The symptom that sent me to the doctor was weakness, especially in my legs, but to a lesser degree in my arms. At my worst, I was unable to stand up or walk unaided.

But, looking back on the years before my diagnosis, I believe I had other symptoms, without realizing it. Most dramatically, I had pain, some degree of numbness and tingling in my lower legs for about a year before I was diagnosed with CIDP. It was bad enough that I eventually went to a pain management specialist. At the time I was told I had a bulging disc in my back and a pinched nerve. I was given steroid shots in my back, but they really didn't help much. I have no proof but strongly suspect that this was really related to CIDP.

Going back even further, I had more vague symptoms. For several years previously, I felt myself becoming awkward - I seemed to trip over nothing, bumped into things while I was walking. I struggled with fatigue, and would get so tired that it was hard to keep my eyes open by late afternoon. Everything seemed more difficult. I wrote it off to aging, since I was in my early 60's. However, once again, I now think it was the onset of the CIDP.

Today I am much better, but still weaker than I used to be, and I still have a problem with fatigue. Balance is a problem, some days worse than others. On the worst days, I cannot put on my pants standing up. Walking seems awkward to me, like I am spastic, but people who watch me tell me that I look normal. The pain in my lower legs is still there, but not as bad as it used to be. I do NOT have problems with foggy brain, cognitive processing, body tremors, slurred speech, tremors, speech. At least, I think I don't. If you have problems with cognitive processing, how do you know?

When my pain is intense in my feet, hands, or legs, I lose my short term memory. Luckily, it’s day-by-day. Luckily, one day I’ll have Iain…the next, balance issues. My eyes are affected and don’t focus at the same speed.

I have weaknesses in legs and arms , lower back pain is constant. I have very strange feelings all over my body in rest .brain fog and poor short term memory. Ivig every 3 wks .

I have been living with CDIP for over 15 years. I have the weakness in legs and arms, pain in lower back, drop foot, balance issues and easily fatigue. I have stated going to a gym determined to get stronger and healthier. It is a catch 22 you work out you hurt you don"t you lose your tone strentghen. It has helped but it so hard to keep going at times. It really helps to read everyones story and know your not alone and even though you look good from the outside your hurting in the inside, just longing to have your life back. Thank you all for sharing

I am sorry to say this but some things people are talking about I think they need a Neurologist that knows a lot about CIDP all the research we have done they do a MRI to check the spine a CAT to check the brain for strokes a EMG to check conduction of the nerve MILO a spine tap for protein. Ask your DR/NURO about everything if he can not answer you change doctors FIND ONE THAT KNOWS CIDP

Hi Gigi,

I started going to a gym about 3 years ago, and it has really helped. When I started, I hated every minute of it, and I still do. But now that I can see improvement, it is easier to stay motivated. You are doing the right thing.

Here is something that helped me: I keep a record of everything that I do. If I do, say, 20 repetitions at a weight of 5 on a certain leg machine, then the next time I know I should be able to do 20 reps again. So, even if I don't feel like doing 20, I know I should be able to, and I make myself do it. Then, as I get a little bit stronger, and I increase to 22 reps, and then 24, and then 25, etc, I can see real improvement. It is heartening to look back at old records and see how much I have improved. (Also, a little bit scary to see how weak I was initially.)

Bill

Gigi said:

I have been living with CDIP for over 15 years. I have the weakness in legs and arms, pain in lower back, drop foot, balance issues and easily fatigue. I have stated going to a gym determined to get stronger and healthier. It is a catch 22 you work out you hurt you don"t you lose your tone strentghen. It has helped but it so hard to keep going at times. It really helps to read everyones story and know your not alone and even though you look good from the outside your hurting in the inside, just longing to have your life back. Thank you all for sharing

Absolutely right! This is one of the biggest problems with CIDP: it is so rare that few doctors are actually familiar with it. (My neurologist thinks it is significantly under-diagnosed because of this.) As you read more posts on this forum, you will see many cases that took a very long time to be diagnosed because the doctors didn't know about CIDP.

So, learn all you can, be your own advocate, and don't be afraid to challenge your doctor if you think you aren't getting the care you need.

Alan Beamer said:

I am sorry to say this but some things people are talking about I think they need a Neurologist that knows a lot about CIDP all the research we have done they do a MRI to check the spine a CAT to check the brain for strokes a EMG to check conduction of the nerve MILO a spine tap for protein. Ask your DR/NURO about everything if he can not answer you change doctors FIND ONE THAT KNOWS CIDP

I have a very knowledgeable Neurologist and have had all these tests done. Last MRI was complete spine and brain. I do not have the significant number of leisions to diagnose my condition as MS., however I am MS symptomatic when my triggers of stress and fatigue are evident. Like I said in my opening, I am interested in other symptoms that people might have to see how widespread the symptoms are independently of each other. it is beginning to sound like most people have symptoms primarily in the lower extremity. I do IVIG infusions monthly in an outpatient setting for inflamation and polyneuropathy. The infusions help immensely in the inflammatory pain but do nothing to help my issues of balance, vertigo, tremors and foggy brain. I am not a candidate for steroid treatments. What other symptoms are others experiencing with this diagnosis of CIDP?

To Uncle Bill. When I say foggy brain it means that I can have a difficult time processing how to get from a-d in problem solving, I get easily confused, I cannot multi task or stay focussed.

I understand, Kristy. I am relieved to say that I don't have foggy brain, because I can't do a lot of the physical things I would like to. If I had problems with mental things too, it would really be depressing.

One of the things that really stands out from this forum is how people's symptoms differ from one to another.

My first symptom was a doozy. A drink of plain tap water would feel fizzy in my mouth, as if it were carbonated. Then some of my sense of taste was lost, and the tip of my nose grew numb. My hands began to tingle severely. When I shook them, they felt like they were vibrating like a bell would do, gradually diminishing. These symmptoms lasted about 8 weeks.

An MRI of my head revealed nothing [old joke], but an EMG convinced my neurologist that I probably have CIDP. I suspect a spinal tap is in my near future. Some of the literature on the subject indicates that involvment of a cranial nerve (the mouth and nose issues) is not uncommon in CIDP cases.

I experience the exact same. At my worst I could barely get out of bed, my arms were too weak to dress myself, and my legs needed to be manually lifted up into bed..walked at a glacial pace, etc.

Sue Jones said:

I have weaknesses in legs and arms , lower back pain is constant. I have very strange feelings all over my body in rest .brain fog and poor short term memory. Ivig every 3 wks .

Does anyone have speech issues or trouble getting words out?

Some do on a FB group that im in. They, along with myself, also have trouble with typing - swapping letters around, or omitting letters and even words.

General concensus seems to be that its the drugs rather than the disease causing the problem.

So…if you think medications cause symptoms, stop meds…and start listing symtoms, then just be ready for what may come. I’m only taking meds because of the symptoms. And yes, mine do mimic MS. I’m so grateful there are medications. Otherwise, for me, the alternative would slay me.