I have had chronic back pain burning legs and sore feet for 8 years. I started having Ataxia so pain doc sends me to Neurologists. I told her what meds I was on and my MRI is clean and brain scan clean. after nerve conduction test she said volicity for Cidp. Pain doctor said taper off Celexa my ataxia is better but still have symptoms when I over do it or feel fatuige. Not sure what to do I guess spinal tap is next to confirm Cidp. Very confused belive pain doctor or Neroligist. Any experience or suggestions I would appreciate. Thanks!
Greg, my only comment would be To use the neurologist in diagnosing
and/or treating a neurological disease (CIDP). CIDP can be a difficult diagnosis. I pursued opinions from 2 neurologists. Ataxia can be a major symptom plus your foot problems and nerve velocity (conduction) issues sound all too familiar as well.
Yes, ataxia could be a symptom of CIDP. For months or years before I had any other symptoms, I noticed that I was getting what I perceived to be "clumsy." I would drop things, stumble, lose my balance, go off-track when I tried to walk in a straight line. I figured it was just creeping old age.
After I got started on IVIG, it is much better, but still not completely gone. I still drop things more often than I should, even though I have learned to be careful, which frustrates my wife to death.
And, JMichaels is correct, stick with the neurologist for diagnosis. CIDP is a rare thing, and many doctors have never heard of it. I was lucky - my family doctor recognized that it was some sort of nerve problem, even though he didn't know about CIDP, and sent me to a neurologist, who made the diagnosis.
My advice is to seek a Neuro second opinion. They will probably check blood work, another EMG, and spinal tap. My EMG was positive for demyelination but my spinal was normal so taps are not always the definitive answer. Some may do a nerve biopsy but I don’t recommend that from hearing about others who have had one. I suffer from ataxia, pins, needles, and burning in extremities. Weakness there also. CIDP affects so many parts of the body that isn’t in any information I have read like digestion, ringing in ears, numbness in tongue and lips. Hope this helps. Mary B
Thank you for your experience since I have tapered off Celexa the Ataxia is better but the pain in feet legs and back that fun burning type is still there. Pain doc has no real medical evidence MRI CT scans that say its arthrits of the facets. I will take the Neros concern over pain docs. Just a little denial going on since Ataxia has gotten better still use cane. Thanks for your input and kindness.
Thank you for the mag links. Yes my foot tingles, sometimes rarely I fell a rush of tingles on the side of my face ( thinking its from a pain med I took 10 min earlier). Low back pain legs like burning acid after standing or walking to long. Feet feel like they have been bruised or knocked on something all the time, once a week aprox left forearm has a area that burns like tennis elbow then goes away. Ugh I usually minimize my pain so please don’t think I am whining. Pain doc I have seen for years look at nerve conduction test and said this doesn’t look like Cidp ( he does have a Cidp patient )its the Celexa causing Ataxia. Now coming to conclusion neroligist is the specialists ( Dah ) will make a appointment today to explain and see if the Celexa can interfere with nerve conduction test. Sorry for rant this is all New to me. Neroligist was pretty sure it Cidp. But when pain doc said its the med I was on of course I want to believe him. Denial isn’t a river in Egypt. I will move forward with Nero. For a grounded guy i feel like I am going nuts lol.
Hi, I have such pain in both my feet that I can rarely walk. I’ve had this pain for over 10 years!! I’ve had all the nerve test- which come back normal. One of my nero’s said I just have to walk and take 1500 mg of neurontin. I was on the drug at a lower mg and I was such a zombie. I don’t know what 1500 mg would have done to me. The other nero’s said it was in my head and I needed to see a shrink. One of the nero’s I saw was reccommended by the shrink I was seeing. He set up the apt, told her what I was going through etc. When he got the nero’s report back he was absolutely blown away. One dr told me I had diabetes and was treating me for that, even though all my tests came back negative for diabetes. My primary dr said I have ideopathic neuropathy and is treating me with high doses of lortab and mophine. I read about a dr in Montana that specializes in CIPD. Don’t have the money to go to him. I just hang on for dear life, but year after year it is getting harder and harder and the pain worse and worse. Don’t know what to do or where to turn.
Hi Greg, I have Cidp, I am on 300mg. of neurontin 3 times a day, it helps with some of the pain, but not the burning in my feet. I went to a acupuncturist and the burning has stopped. that has been a relief for me.
Good news Paul! My pain is put of control on back legs feet I am trying to get to Nero to get spinal tap to confirm. After looking and researching my nerve conduction test it shows definite signs of Cidp. Shouldint have listen to pain doctor saying celexa is causing Ataxia. Off that stuff now so not as shaky at all. Going to Nero office to get appointment. Yeppie!
I also found myself falling frequently and dropping things. I thought I was clumsy and just rushing too much. Since being diagnosed with CIDP back in February of this year, it explains a lot of those symptoms. Also, I started on Celexa after being diagnosed with CIDP because I was depressed with being diagnosed with this chronic condition. I had more incidents of ataxia prior to being diagnosed with CIDP than I have since being on the Celexa. So my money is on your diagnosis of CIDP.
Hang in there!
Lisa in Michigan
Thank you Lisa that really helped me…the celexa issue of 40 mg for me is what pain doc said caused Ataxia. Your answer helps greatly. Talked to Nero about it yesterday to see if celexa could interfere with nerve condition test. I don’t think doctors like to step on each others toes so she said some meds do usually cancer meds but not familiar with Celexa enough to say. She is also a psychiatristneroligist. Spinal tap next. Thank you for your experience!