CIDP or Small Fiber Peripheral Neuropathy?

    • Anonymous
      August 26, 2006 at 7:44 am

      Hi All,

      I am new and am hoping someone can help me out here. I had a C3/C4 fusion done in 2004. In the meantime my C5/C6 was bad and is and was still encroaching on the spinal cord. I am due to have surgery on that level next month. Anyway, about 6 months after my first fusion I had slight burning in my hands and feet. My Neurologist was very thorough and ran every test you can think of, plus had Athena Diagnostics come in and run even more specialized tests. She did this not once but twice and also did two EMGs and a QSART. She kept telling me that my fusion was INDEPENDENT of the first fusion. She tried to treat me with Neurontin, Lyrica and Cymbalta. I could not tolerate any of those at all no matter how long I waited for the dizziness to go away. So, she had me try Xanax and eventually put me on Klonopin. Oh, and oops, she had diagnosed me with idiopathic small fiber peripheral neuropathy. Evidently, it was so minute it almost didn’t show up on the charts. Anyway, the Klonopin took the burning down to almost non-existent. So, here I am today, worsening. I met with my Neuro last week and showed her my cervical MRI where the C5/C6 is “going”. She tends to think now that because the spinal cord is compressed that it is very possible that the pain is shooting everywhere in my body. I notice my right arm and both hands are burning now and my feet ankles are sometimes on fire. She tested my reflexes and all of that and I guess I am okay as far as that goes. And I don’t feel any weakness really. My legs will sometimes cramp but that could be from lumbar issues as well. Because I am getting scared I called my spine doc(s) and they have phoned in a prescription for a Medrol 4mg Dosepak just to take the inflammation or burning down. I am hesitant to take it only because I have gastro problems too. But I need to do something. So, my question becomes, how does one know if it is truly neuropathy or CIDP? I definitely need this second fusion and am frightened that it will worsen whatever it is I have. But my Neuro says if anything, it should improve. Sorry for rambling so much here but this has gone on for almost 2 years now. And I thank anyone here in advance for helping me out with this. 🙂

    • Anonymous
      August 26, 2006 at 9:59 am

      Kathi, if you have a lesion in your cervical spine causing the symptoms you describe, you have cervical Spondylitic Myelopathy which causes, as you describe, predominantly sensory features, usually with increased tendon reflexes. And at times a positive Lhermitte’s sign (flexing neck forward causes electric shocks in legs).

      CIDP is a peripheral neuropathy nearly always with mixed sensory and motor (muscle weakness) features, except perhaps early CIDP and IgM gammopathy variant of CIDP, this one shows abnormal proteins in protein study by electrophoretic strip.

      CIDP, by definition, shows reduced or absent tendon reflexes with signs of peripheral demyelination on electrical studies or nerve biopsy. Sorry about all the techi stuff.. DocDavid

    • Anonymous
      August 26, 2006 at 10:36 am

      Thank you Doc David! 🙂

      And don’t apologize for the techie stuff. I was a computer techie once but this neuropathy stuff is fairly new to me! 🙂 Okay, so are you trying to tell me that more than likely it is my cervical spine causing this mess? I know what myelopathy is although the docs always call it radiculopathy. In any case, I meet with my Neurosurgeon in about two weeks and I am going to let him know about these worsening sensations. Also, my EMG’s, QSART, reflexes, etc. tested out okay with the exception of the small fiber PN I mentioned. I also know my proteins were okay and I don’t have diabetes. Again, all the blood tests came out okay. Oh, and I don’t have any “electric shock” feelings at all. It is all just burning…no numbness either. I don’t necessarily feel weak; but my arms are starting to get little tremors (more than likely from the C5/C6 based on dermatomes). In a rather strange way I am hoping this is coming from the neck and not an autoimmune condition that they just haven’t found yet. I just mean that when I get this second fusion, I am hoping things will improve although it may take a long while. Thanks again!

    • Anonymous
      December 16, 2008 at 9:13 pm

      Hi Kathi,
      I know it has been 2 yrs since you posted the message below, however I was searching the net for info on small fiber neuropathy and I came upon this site. Your situation sounded so similar to mine that I registered with this service in order to correspond with you.
      I am a 58 year old female who at age 47 yrs was diagnosed with cervical spondylosis or degeneration of the disc in my neck. I had my first fusion at C5/C6 in 1987, a second fusion at C4/C5 in 2000 and the last two at C3/C4 & C6/C7 after removal of a tetanium plate which had been inserted in 2000 to stabalize my neck.The plate caused terrible pain & headaches in addition to the growth of a large bone spur which pressed into my throat causing me to wake up at night choking. After they removed the plate and spur I definitely found relief. However my lower neck, shoulders and shoulder joints hurt continuously. I went on long term disability 5 years ago and I might add, at the height of my career as a clinical social worker.
      In feb of this year I noticed the toes on my left foot started to turn outward and became very painful. Within a mth or so the last 3 toes became numb, It is now 9 mths down the road and both feet are numb, burn, & tingle. At times my legs feel like electic shocks. Numbness sometimes moves up my rt leg to just above the knee but then the next day it goes away. Sometimes the numbness feels like a tight band strangling my ankle. Sometimes my feet are so cold I cannot tolerate walking on a tiled kitchen floor even with rubber bottom slippers on, without horrible pain.
      Last week I saw a neurologist at Lahey Clinic in Boston who ordered MRI’s of my lumber and cervical spine as well as EMG’s and they were all normal. Several blood test were done which appeared to be normal and I am not diabetic. The doc suspects that the problem is small fiber neuropathy and has prescribed neurontin. Like you I think the problem has somthing to do with my cervical issues but he as well as 2 other neurologist have said otherwise. I have been taking percocet for my cervical pain for 10 years and now they are recommending more meds. I am really fed up with the lack of answers and the lack of interest shown by doctors. Please, if there is ANYONE out there who has a similar problem and can give me insight and advise I would greatly appreciate it.
      With all this said, Kathi how are you doing now .. 2 years down the road? I hope you have had better results. Please let me know how you are doing and my apology for this long message!