Experiencing Symptoms of CIPD

    • January 8, 2015 at 12:39 am

      Hi everyone,

      I have been experiencing symptoms of CIPD for the past year and a half and have a couple of questions as I have not yet been officially diagnosed.

      My symptoms (most debilitating to least) include:

      • Difficulty standing, walking and maintaining balance, multiple episodes of falling (1.5 years)
      • Numbness/tingling/throbbing/burning/pain of extremities (especially on right side) which started in feet and later spread to arms/hands, symptoms are most pronounced in hands and feet, burning sensation is most severe under arms, NO loss of sensation to touch (1.5 years)
      • General muscle weakness (especially in right arm and leg), frequent (some days 100+) muscle spasms throughout body, frequent muscle cramps (1.5 years)
      • Difficulty speaking, slurring of speech, pain and tightness in throat, need to concentrate on pronunciation of many simple words I have not previously had any trouble with (4 years)
      • Fatigue (4 years)
      • Sudden extreme mid-back pain, constant lower back pain (lower back pain appears to have diminished following antibiotic treatment for Prostatitis) (4 years)
      • Constant pain/stiffness radiating down right side of face/neck (4 years)
      • Enlarged lymph nodes in right mandibular region as observed during Ultrasound, no abnormalities found (4 years)

      I am wondering if it’s common for symptoms to be worse on one side of the body than the other. My symptoms are worse on my right side but are symmetrical from top to bottom.

      Also, I find I get flare-ups any time I am run down due to a cold or not enough sleep. During the periods I am extremely run down I find that the texture of the skin inside my mouth begins to change and becomes very mushy. Has anyone else experienced this? I have not heard any complaints of this symptom from others caused by any disease. This one really bothers me as I appear to be the only person in the world who experiences this.

      Have others found that their symptoms began following a severe infection? For me they started after a severe bout of pneumonia and has been followed by chronic infection including sinusitis and prostatitis. My previous level of health did not return following the pneumonia and have been feeling constantly run down ever since.

      I very much appreciate any input you may have for me.


    • jk
      March 10, 2015 at 1:29 pm

      Diagnosing CIDP has a specific set of criteria including personal history, clinical exam and laboratory testing. Some results rule in CIPD. Some results rule out CIDP. Examples of lab tests include electromyography (EMG) with nerve conduction (NCV) studies, blood tests and analysis of spinal fluid.

      Most CIDP is noted for a lack of deep tendon reflexes.

      You indicate a 4 year history of problems. For discussion purposes all the following may have symptoms similar to CIDP-

      other known causes of neuropathy, including inherited neuropathies, multifocal motor neuropathy (with or without conduction block), paraneoplastic disorders, lymphoma, osteosclerotic or multiple myeloma, POEMS syndrome (plasma cell dyscrasia with polyneuropathy, organomegaly, endocrinopathy, M protein, and skin changes), Castleman syndrome, HIV, major immune diseases of kidney or bowel, necrotizing vasculitis, a known or suspected metabolic deficiency or toxic condition that might cause neuropathy, Lyme disease, immune sensory and autonomic neuropathies, presence of hepatitis C, or cryoglobulins. Because some neurologists consider patients with monoclonal gammopathy of undetermined significance (MGUS)–associated peripheral neuropathy distinct from CIDP.

      And of course, Lou Gehrigs disease, or ALS. None of this is intended for any purpose except to encourage you to seek a definitive diagnosis. Or two.

    • GH
      March 10, 2015 at 9:03 pm

      CIDP is generally bilaterally symettric, although there can be some small asymmetries.

      If you are having difficulty walking, balance issues, and are falling, you are overdue for seeing a neurologist to get a proper diagnosis. You must do this ASAP!