Help with diagnosis

    • Anonymous
      August 26, 2010 at 1:12 am


      This is my first post here. I have been having increasing pain in my hands and feet for 5 months and have been unable to diagnose what is happening to me. I appreciate any insight you can provide me! Here is some history:

      Pain started in feet mostly between heal and metatarsals

      Feels like my feet are bruised and it hurts when I walk or stand. I can only stand for about 10 minutes without the pain getting out of control. Bare feet are worse. However, even while sitting, having shoes on is uncomfortable and my toes start to burn.

      I have zero pain while floating in a pool or laying in bed with shoes off.

      Treated for plantar fasciitis for 3 months (rest, ice, creams, orthotics, fancy shoes) and it kept getting worse. Saw 3 different doctors.

      Pain started to show in hands 3 months ago. Pain is 5X worse in feet than in hands. Pain in hands follows pattern in feet – mostly in the palm itself. Hands and feet feel tight when I flex them.

      I do not have weakness or areflexia. I have full sense of fine touch and temperature sensation on hands and feet.

      My pain is always less when I wake up and worsens during the day – but no pain while sleeping.

      Went to see 2 neuros. First referred me to second. Did NCS/EMG. EMG was fine, but NCS was very bad. We found long delays in both hands and feet which indicate demyelinating neuropathy. They repeated the test with same result. They ruled out Tarsal/Carpal tunnel (I asked them). I have no Tinel’s sign.

      I have no history of Charcot-Marie-Tooth or CIPD in my family.

      Pain has progressed steadly worse each month. No sign of remitting and relapsing.

      My toes burn when I urinate – every time.

      6 months ago I was playing basketball, hiking – and was very active. Now I can’t walk more than a couple blocks (slowly at that). Any ideas?

      Thank you!


    • Anonymous
      August 26, 2010 at 6:54 am

      You do sound like you have symptoms of cidp. What is the doctor saying now? Most of the people on this forum do not have any family members with cidp. If your doctors does not know after the last serious of test he should maybe do a spinal tap and that would help with diagnosis. Please keep us posted.

    • Anonymous
      August 26, 2010 at 11:27 am


      Did you have a spinal tap done? They will be looking for elevated protein levels. I would call the neuro office and ask for one.

      Rhonda from Canada

    • Anonymous
      August 26, 2010 at 1:11 pm


      I posted an article a few weeks ago written by Dr. Richard Lewis. He is a CIDP expert…there is a variant of CIDP named after him (Lewis-Sumner).

      Here is the link to the article: [url][/url]

      You should print it out & take it to your neuro. It gives info on what tests should be done to help with your diagnosis.

      I personally feel you should have a spinal tap, MRI with & without contrast of the brain, neck & spine along with the EMG you already have had. Those are the 3 most common tests given to determine a diagnosis in people presenting with your symptoms.

      Good luck,

    • Anonymous
      August 29, 2010 at 2:17 pm


      Thanks for your input. Since my post, I have received some blood work back that indicate I do not have diabetes or hypothyroid issues. However, the blood tests do show I have high levels of IgA (anti-gliadin antibodies). I had read about 1 month ago that gluten sensitivity can result in neuropathy – so I have been eating gluten free for about 3 weeks. No improvement yet.

      Have any of you heard anything about IgA, going gluten free, and helping with neuropathy?

      My neuro has now asked me to to do a full panel of genetic testing for Charcot-Marie-Tooth. This will likely be my next step. What do you think? If that does not work, I will take your advice on the spinal tap.

      Thank you!


    • Anonymous
      August 29, 2010 at 3:29 pm

      I have to weigh in with the folks that are recommending a spinal tap. I suffered and grew worse and worse for six months until I got one and with that the diagnosis followed. Symptoms combined with high protein in spinal fluid gave us the answer we were looking for. I was initially frightened at the prospect of the procedure, but it was a snap. No pain, no headache …
      Best of luck. Keep us posted.

    • Anonymous
      August 29, 2010 at 10:45 pm

      I’m just glad you mention the fact that when you urinate, your feet burn. I
      thought “Now what is happening?” Every time I go pee the palms of my hands
      burn like crazy!! Does anyone know what causes this?? Kelly, I did print out
      that article and Thurs. I will be taking it to my doctor when I get my treatment. I know he wanted to do a skin biopsy but I’m going to seriously
      talk to him about a spinal tap.

      Miss Judy

    • Anonymous
      August 30, 2010 at 5:58 pm

      Lots of good advice here.

      I had two spinal taps. both unremarkable.

      I also had genetic tests for stuff. All negative. The goal is to find out what you don’t have as well as what you do have.

      Be assertive, do not be complacent. change drs as needed.

      well, I’ve seen more than 40…… Drs I mean.

      good luck