• Anonymous
      August 5, 2007 at 2:50 pm

      Hi everyone,

      I’ve been diagnosed with CIDP for about six years now and have suffered symptoms of it for several years before that, primarily foot drop, weakness in lower legs and hands as well as muscle atrophy. However, my neurologists have never been 100% convinced it’s CIDP. For instance, my LP showed normal protein levels and I actually have more brisk reflexes in my knees than normal.

      It was a very gradual progression of weakness in my lower legs that caused foot drop in my late teens and I ultimately realized something was wrong when I was about 18. The nerve conduction studies have shown that it is primarily a motor neuropathy affecting my hands and feet. I went on IVIG treatments of 50g every 3 or 4 months for 4 years that showed a modest improvement in strength that would gradually decay after several months. However, my loss of strength has never significantly progressed and I am still generally able to walk well over long distances, especially if I am wearing tennis shoes, and I am able to run on the treadmill for several miles. So, the disease doesn’t seem too be incredibly drastic.

      After graduating from school and moving, my new (and current) neurologist wanted to do a battery of tests including brain and spinal MRI, skin biopsy and blood work, all of which came back normal. However, during that time and because of work I haven’t had an IVIG treatment in two years and have started to feel more general aches and pains (headache, neck ache, back pain, soreness in thighs) over the last six months. I was wondering if anyone has had similar experiences with CIDP and if they have ever had aches and pains outside of the leg and arm weakness as a result of it?

    • Anonymous
      August 5, 2007 at 5:02 pm

      Hi Matt,
      I am glad you are doing good, when I was diagnosed my lp showed a protein level of 106 and the MRI was used to ruled out MS,I had a nerve biopsy, not sure what skin biopsy was for? But pretty much all my aches and pains were peripherial. I have moved many times always have asked my neuroligist to recommed someone in the area i was moving. I have always found the best neurologist to be with a university hospital or working with or have relations with other neuologists in the teaching hospitals. Hope this helps. let me know

    • Anonymous
      August 6, 2007 at 1:02 am

      Hi Matt, Welcome to The Family. Normal lp isn’t unusual in about 10% of all cidp patients. Why not try the ivig and see how you react to it, if you have good results then stick to it. Take care.