Hi! I'm wondering if anyone can comment/advise on my situation please. I had nerve conduction tests done in January and the results indicated CIDP. The neurologist organised IVIG treatment which I have had throughout this year. When I went for a follow-up appointment this week he changed his mind and said that I probably don't have CIDP as it causes weakness, not pain (I think this was based on his examination of me). I have nerve pain in my feet and ankles and cannot walk for more than 5 minutes because of pain. I am now being put on Gabapentin and will discontinue the IVIG. I am concerned he is only treating the symptoms and not the cause. Does anyone else have painful feet and ankles but basically normal reflexes? (the one abnormal reflex I have is the babinski reflex, but this is probably due to hydrocephalus which I was diagnosed with 3 years ago and had a shunt inserted). Would love some comment please!
I am not a doctor, but I do have CIDP, so what you are telling me is really aggravating! YES, you do have pain with CIDP, along with weakness, numbness, loss of mobility, etc… Sometimes I wonder where these doctors are getting their information. Certainly, not from CIDP networks or patients. I am on IVIG treatments and take Gabapentin for the nerve PAIN as well as another pain pill when needed. I take meds as needed, which is usually towards the end of a cycle (when it’s time for IVIG). Suggest to your physician to read the latest abstract available on line regarding CIDP and the treatment of choice. Maybe you need to find another neurologist. I wouldn’t stop the IVIG treatments if you are getting relief from them. Good luck!
Abnormal reflexes are almost required for the Diagnosis of CIDP. As time passes and more research is done, EMG & NCT findings don’t play quite as prominent role as they did before. Clinical findings of burning type types peripherally which is mostly symmetrical, plus absent or near absent reflexes in the extremities affected all of which are chronic in nature are indicative of so many peripheral polyneuropathies of which CIDP is just one but after the most common have been eliminated then CIDP can be considered. IVIG infusion therapy is and has been over-used by many often when they are unable to mak an exact Dx of CIDP. You might want to try a second opinion before you go any farther; however, the Gabapentin is a common used first to control neuropathicaip. Hope it helps. Geeps
People present differently and diagnosis is hard to make. EMG/NCv is one tool in diagnosis. A Spinal tap usually shows high protein in CIDP although not always. My reflexes were altered when in a flare but not as much in remission so I don’t think you can totally exclude by that. Nerve biopsy is definitive way to diagnosis but is done only as a last result because it can cause loss of nerve function in the biopsy area. I would recommend a second opinion by someone who is familiar or has treated other CIDP patients. I was typical CIDP. I had pain, numbness, tingling, burning, and loss of motor function There are variations of CIDP that have varying symptoms. One is SFN which classically is mostly a pain issue. Also, do some research on variants to see if you may follow those patterns. Good Luck.
CIDP certainly can cause pain, in varying degrees, but as far as I can tell, it always causes weakness. So, if you don't have weakness, he may be correct that you do not actually have CIDP. Loss of reflexes is also an indicator. I have no reflexes whatsoever in my legs. (My family doctor delights in having residents who are working with him try to test my reflexes, and they always are very puzzled when they can't find any.)
My experience was that the IVIG worked like a miracle for the weakness. My pain was never really too bad, although it would occasionally wake me up at night. But the IVIG seemed to have no effect on the pain, which comes and goes whenever it pleases. Right now it is back, but in a month or two it will probably be mostly gone again.
If you are getting the idea that CIDP is hard to diagnose, you are correct. Read and learn as much as you can from reputable sites, and don't be afraid to try to educate your doctor. If he/she is honest, he will probably admit that he doesn't know much about CIDP, because few doctors do.
Bill
Thank you so much everyone for your comments. Lots to think about and investigate! I’m now wondering if my reflexes were normal due to having had IVIG. I’m also wondering about degree of weakness; I can’t climb stairs without using my arms to pull myself up, but I don’t know if this constitutes enough of a weakness. I had a spinal tap done; it showed raised protein levels but this was put down to hydrocephalus.
Really interesting to read that others experience pain. I am wondering why he told me that pain is not a symptom!
Yes! That degree of weakness definitely is consistent with CIDP.
Heather said:
Thank you so much everyone for your comments. Lots to think about and investigate! I'm now wondering if my reflexes were normal due to having had IVIG. I'm also wondering about degree of weakness; I can't climb stairs without using my arms to pull myself up, but I don't know if this constitutes enough of a weakness. I had a spinal tap done; it showed raised protein levels but this was put down to hydrocephalus.
Really interesting to read that others experience pain. I am wondering why he told me that pain is not a symptom!
It took several weeks of exams and tests to finally define that I have CIDP. I've been through 2 EMGs, Spinal tap, Sural Nerve Biopsy and a long list of others exams, so no one can affirm you have CIDP only with an EMG (I am assuming you did this exam only). Weakness and Pain are always present, but can be at different parts of the body, I feel pain in my hands and feet, symptoms depend on body parts that have pre existing weaknesses. According to doctors (at Mayo Clinic) Ivig continue to be the best treatment until today, mainly because of causing little side effects.
To confirm CIDP you must go thru some other testings, and then define what your problem is, and the treatment you need.
Thank you everyone! This has been very helpful. I’ll be making an appointment with my GP on Monday to see what he recommends I do next.
I don’t think a GP can diagnose CIDP. It takes a neurologist knowledgable in neuromuscular disorders including CIDP. If you have not had a spinal tap as suggested by others here then your work up is incomplete. Again, I suggest you seek out a “center of excellence” in the diagnosis and treatment of CIDP.
Ps: I am an MD with CIDP and Epilepsy and radiculopathy from failed back surgery. Your treatment is in YOUR HANDS so make the most of it. Geeps
Heather said:
Thank you everyone! This has been very helpful. I’ll be making an appointment with my GP on Monday to see what he recommends I do next.
Geeps said:
I don't think a GP can diagnose CIDP. It takes a neurologist knowledgable in neuromuscular disorders including CIDP. If you have not had a spinal tap as suggested by others here then your work up is incomplete. Again, I suggest you seek out a "center of excellence" in the diagnosis and treatment of CIDP.
Ps: I am an MD with CIDP and Epilepsy and radiculopathy from failed back surgery. Your treatment is in YOUR HANDS so make the most of it. Geeps
Heather said:Thank you everyone! This has been very helpful. I'll be making an appointment with my GP on Monday to see what he recommends I do next.
I have pretty significant pain with my CIDP. There are days that I feel like I am being cremated alive. I have really intense burning pain for about 1-2 months that fades away to total numbness not to mention hypersensitivity. There are different types of CIDP. Did the IVIG help your symptoms at all?
Heather, I am sorry to tell you que as soon as They find anyone has CIDP, the chances are only treating the symptoms are there's no cure for that. Try to be treated as well as possible in order to not feel any pain and muscle Increase strength to try to have a regular life. Physiotherapy is helping me to NEVER FALL DOWN AS IT IS OFTEN DEADLY FOR WHO HAS CIDP, PLEASE TAKE CARE OF YOURSELF. Neurologists SPECIALIZED this type of disease are those who can help you. Ask if the specialty of who you are looking for, is that kind of disease.
It's amazing, but in my case, when I'm focused on something, talk with friends, good movies, anything to divert my empty mind, help me forget the pain! Try to get out, have fun
Sunshine said:
I have pretty significant pain with my CIDP. There are days that I feel like I am being cremated alive. I have really intense burning pain for about 1-2 months that fades away to total numbness not to mention hypersensitivity. There are different types of CIDP. Did the IVIG help your symptoms at all?
Hi Sunshine, the one thing I have noticed that is different now compared to before the IVIG is that my feet no longer 'slap down' when I walk. However I'm taking such small steps now it's hard to compare. I'm really puzzled why my neurologist said that pain is not really a symptom!
Thanks for your advice 'Bishop22' !! I do try to keep as fit as possible and have found the best exercise for me is aqua-jogging. My friend who goes with me has to slow down though as I don't seem to have the power in my legs to keep up!
Heather said:
Hi Sunshine, the one thing I have noticed that is different now compared to before the IVIG is that my feet no longer 'slap down' when I walk. However I'm taking such small steps now it's hard to compare. I'm really puzzled why my neurologist said that pain is not really a symptom!
Thanks for your advice 'Bishop22' !! I do try to keep as fit as possible and have found the best exercise for me is aqua-jogging. My friend who goes with me has to slow down though as I don't seem to have the power in my legs to keep up!
Heather, Remember what I've said. I've broken my femur due to my legs weakness. Now everything is much much more difficult to me. I'm happy you've gotta a friend to help ya!. ALWAYS ASK FOR A FRIEND'S HELP, IF YOU DON'T FEEL SAFE TO DO ANYTHING.EN BY YOUR OWN (WE ARE NOT NORMAL, ANY MORE, AND MUST LIVE WITH THAT), EVEN IF YOU HAVE TO BEG. Eu já caí muitas vezes, and já machuquei meu rosto e joelhos very bad
BISHOP22 said:
Heather said:Hi Sunshine, the one thing I have noticed that is different now compared to before the IVIG is that my feet no longer 'slap down' when I walk. However I'm taking such small steps now it's hard to compare. I'm really puzzled why my neurologist said that pain is not really a symptom!
Thanks for your advice 'Bishop22' !! I do try to keep as fit as possible and have found the best exercise for me is aqua-jogging. My friend who goes with me has to slow down though as I don't seem to have the power in my legs to keep up!
Heather, Remember what I've said. I've broken my femur due to my legs weakness. Now everything is much much more difficult to me. I'm happy you've gotta a friend to help ya!. ALWAYS ASK FOR A FRIEND'S HELP, IF YOU DON'T FEEL SAFE TO DO ANYTHING.EN BY YOUR OWN (WE ARE NOT NORMAL, ANY MORE, AND MUST LIVE WITH THAT), EVEN IF YOU HAVE TO BEG. Eu já caí muitas vezes, and já machuquei meu rosto e joelhos very bad
Sorry for the words in Portuguese:
Heather, Remember what I've said. I've broken my femur due to my legs weakness. Now everything is much much more difficult to me. I'm happy you've gotta a friend to help ya!. ALWAYS ASK FOR A FRIEND'S HELP, IF YOU DON'T FEEL SAFE TO DO ANYTHING.EN BY YOUR OWN (WE ARE NOT NORMAL, ANY MORE, AND MUST LIVE WITH THAT), EVEN IF YOU HAVE TO BEG. I've already fallen down many times, and now my face and knees hurt very bad
Where do you live? there might be a specialist in CIDP near you.
I live in Hamilton, New Zealand!
I have had cidp for 4 years now.when I was first told I had it I could hardly walk.was given gabapentin and Imuran. I am walking better.I still have serious nerve pain and still take methadone and gabapentin.just keep going.tell your doctor to give you a spinal tap. That will differently tell them if you have cidp.good night. Keep believing in yourself and god.