CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

I have severe chronic polyradiculopathy (legs/lumbosacral and neck) with neuropathy in right arm. I have not had a biopsy to see if I have sfn. So, I’m not sure where to look. I have appointments with nm doctors and pain Management and am not certain what I should be asking or telling them. I’ve been having such pain and weird symptoms. I need help.

I”m not sure what I’ve got. I have some neuropathy and radiculopathy but dont have a dx for what has caused the polyradiculopathy. Its such a long story.

Wondering how you were diagnosed and by what kind of doctor? I may be joining this chat late so may have missed that information but if you haven’t considered this you should see a neuromuscular Neurologist who can do and examination, nerve conduction study and an EMG to determine what type of neuropathy you have. Once you have a diagnosis, then there’s more likelihood of a successful treatment.

In my particular situation, it took a long time to get a diagnosis because the condition (CIDP) hadn’t progressed to the point where the symptoms were present.

My neuropathy has also been diagnosed with Polyneuropathy. I was actually given nothing different to deal with it other than a recommendation to have cervical surgery which at 86 I am too old to be willing to go with that kind of surgery. I was told by not having the surgery I am eventually risking being confined to a wheelchair. I sure don’t want that but neither do I intend to have surgery at my age. I have already had my lumbar done to stay out of a wheelchair. It made no difference in the numbness in my feet and legs. I was diagnosed with neuropathy in 2013 but have dealt with it far longer. I could not take gambapenten nor lyrica but do take x2 5 mg of oxycodone at bedtime and have for seven or so years. It helps with the burning in my toes and heels of my feet during sleep time. I do not use it during the daytime hours. I am very aware of its addicting nature. The choices we make but need to be our own advocate in what we allow as far as surgeries. I do not understand this new diagnosis. However, I have never been diagnoses as diabetic. I have a terrible time with my balance and fall backwards easily and it definitely effects my walking. I have never been a smoker and only drink a margarita with Mexican food or a glass of wine occasionally so actually, never have been a drinker. Rarely! It’s a puzzling condition to live with.

Hi,

I have a neuromuscular doctor. I had nerve conduction studies. All four extremities were tested around last year and a different dr the year before. I have posted results in prior posts (a while back).

I changed hospital affiliations. The prior dr to that said I had demylinating….something I cant recall full report that was the year prior to that. She did one leg and an arm. Long story there…anyway…

The newer neuromuscular neurologist said I have chronic, severe poly radiculopathy (nerve damage to lumbar spine and neck) based on those nerve conduction studies. She did not find large fiber neuropathy in legs (only the cubital tunnel).

She said, in order to determine if i have sfn I would need a biopsy.

She said all the symptoms, the burning, tingling, stinging, spasms were caused by this. She put me on an anti inflammatory diet that was purely ridiculous. It was so restrictive and eliminated so much and food groups I did it for a month (for the most part) and could not tolerate another salad.

I saw a physical therapist for over 20+ visits in 2023 who was great and did therapy that was geared to back and for neuromuscular retraining. That terminology request helped me because my balance isn’t great.

The therapist was the one who asked me if I’d heard of CIDP. I did because I researched it after the dx of the symptom of polyradiculopathy. So, we chatted a while and she gave me the name of another NM doctor in my hospital affiliation.

I said I’m not too happy at present with a doctor who has gone half way. Discovered a “symptom” that needs a dx to get proper treatment. She originally was going to do a spinal tap but wanted me to try the anti inflammatory diet.

So, if I don’t get to far with her, if she does not diagnose and treat me, I’m going to go somewhere else. I have a “second” opinion scheduled for early summer (Its the earliest she has).

She had said, epidural and ablation not a good idea for me because it would make balance worse.

The pt said she didn’t think based on seeing me in therapy etc and talking getting to know what I feel and experience that this diet was going to address it.

She stuck her neck out for me by making that recommendation to me.

So, I have enough symptoms someone should be able to figure out something and help.

I just saw my gp/pcp last night. He gave me baclofen to help with the bad spasm in lower calf. The striking nerve pain on bottom of foot is something else. I have to wait for neuro for that.

I’m at my wits end and am in a flare.

Is or can CIDP (poly radiculopathy) be hereditary? Someone in extended family has it an is going for infusion therapy.

I might travel to get dx if I can’t get the right help. These doctors are hard to come by here.

Hi,

I have a neuromuscular doctor. I had nerve conduction studies. All four extremities were tested around last year and a different dr the year before. I have posted results in prior posts (a while back).

I changed hospital affiliations. The prior dr to that said I had demylinating….something I cant recall full report that was the year prior to that. She did one leg and an arm. Long story there…anyway…

The newer neuromuscular neurologist said I have chronic, severe poly radiculopathy (nerve damage to lumbar spine and neck) based on those nerve conduction studies. She did not find large fiber neuropathy in legs (only the cubital tunnel).

She said, in order to determine if i have sfn I would need a biopsy.

She said all the symptoms, the burning, tingling, stinging, spasms were caused by this. She put me on an anti inflammatory diet that was purely ridiculous. It was so restrictive and eliminated so much and food groups I did it for a month (for the most part) and could not tolerate another salad.

I saw a physical therapist for over 20+ visits in 2023 who was great and did therapy that was geared to back and for neuromuscular retraining. That terminology request helped me because my balance isn’t great.

The therapist was the one who asked me if I’d heard of CIDP. I did because I researched it after the dx of the symptom of polyradiculopathy. So, we chatted a while and she gave me the name of another NM doctor in my hospital affiliation.

I said I’m not too happy at present with a doctor who has gone half way. Discovered a “symptom” that needs a dx to get proper treatment. She originally was going to do a spinal tap but wanted me to try the anti inflammatory diet.

So, if I don’t get to far with her, if she does not diagnose and treat me, I’m going to go somewhere else. I have a “second” opinion scheduled for early summer (Its the earliest she has).

She had said, epidural and ablation not a good idea for me because it would make balance worse.

The pt said she didn’t think based on seeing me in therapy etc and talking getting to know what I feel and experience that this diet was going to address it.

She stuck her neck out for me by making that recommendation to me.

So, I have enough symptoms someone should be able to figure out something and help.

I just saw my gp/pcp last night. He gave me baclofen to help with the bad spasm in lower calf. The striking nerve pain on bottom of foot is something else. I have to wait for neuro for that.

I’m at my wits end and am in a flare.

Is or can CIDP (poly radiculopathy) be hereditary? Someone in extended family has it an is going for infusion therapy.

I might travel to get dx if I can’t get the right help. These doctors are hard to come by here.

Raw cucumber is good for the nerves. I'd get some and eat one a day and after a week see if I feel any better. Food is the best medicine. And Jesus too.

CIDP is NOT hereditary as far as we know but there are some very similar symptoms to CMT which IS hereditary.

It can be difficult and take some time for symptoms to change before you can get a definitive diagnosis.

The pains you are having that come and go can be part of the nerve damage - and will change as the condition progresses.