CIDP? symptom questions

    • Anonymous
      March 15, 2014 at 5:44 pm

      Hello everyone,
      I have been dealing with various neurological symptoms for some time. My neurologist was suspecting MS however I have a clean MRI of Brain and all three regions of my spine. So now I hear about CIPD. I have noticed a lot of people say the started with feeling of stiff or numb toes or fingers. I first dealt with extreme pain in lower back and numbness and stiffness in leg and arm on left side. Slowly over two years time it turned into numbness and stiffness in both legs. Other times it would be arms. I have also had ice/hot sensation on top of my head and numbness in my lips. At times my symptoms are so bad I can’t walk for three or more weeks. Other times I am better but still have impaired movement weakness in thighs and arms. I know these illnesses are very vague. I guess my Question is can CIPD start in the lower back and extremities or does it always start in the toes and fingers then work its way up?

      I also forgot to mention I recently discovered that my maternal Great Uncle had CIPD and lost his life from it. So I feel kinda sacred by this possible diagnosis. Any information about onset would be greatly appreciated.

      Thank you

    • March 15, 2014 at 8:37 pm

      Symptoms of CIDP often start with tingling or numbness in the extremities of the body. The hands, feet, and face are often affected first. In my case, numbness started in the buttock and travelled down my legs to my feet and up my abdomen to my arms and hands. My mouth went numb, mostly on the right side, along with my right cheek and eye. Some of my symptoms may have been due to the Miller Fisher Syndrome (MFS) variant I was told I have in addition to CIDP.

      People with CIDP suffer from a wide range of symptoms that may include:
      – weakness in leg, arm, and facial muscles
      – tingling, numbness, creepy/crawly feelings, hot/cold, zingers
      – problems with speech and swallowing
      – pain in the muscles of the back
      – shortness of breath
      – decreased ability to move the eyes or parts of the face

      Variants can make it more difficult to diagnose and treat neuropathies and an experienced neuromuscular specialist can make a difference.

      Please read the following publication for more details:

      Additional info can be found here:

    • March 15, 2014 at 8:58 pm

      Getting CIDP as a result of genetic predisposition is an unlikely possibility, according to what I have read. You can read more about that here:

    • Anonymous
      March 16, 2014 at 4:17 am

      Thank you for the information. I feel so overwhelmed by all of this. I have spoken to my neurologist about Marie tooth because both my mom and my Grandma were diagnosed with neuropathy fairly young. They do not have any other contributing factors such as diabetes. My grandfather has Parkinson’s so my neurologist feeling my family is prone to autoimmune disorders. I have a nerve conductivity test scheduled for April 3rd so I guess we shall see. I can’t seem to find the box I fit into. Thank you for your help.