Hi,

My son who is 14 has been very sick for over three years and seems to be declining from a neurologic point of view and I'm wondering if he could have CIDP. Can/does CIDP cause back pain, dizziness (severe), feelings like you can't breathe, cheek/tongue biting when you eat, mild confusion or being slow to process, balance issues and/or severe headaches? He has had all the "usual" tests but nothing so-far points to a specific dx. He had a lumbar puncture but only to test for high pressure, which he has, and the spinal fluid wasn't tested for anything. How is CIDP diagnosed and can MRI's of the brain/spine be relatively normal or are there abnormalities that MRI would have to show in order to come to a dx of CIDP? Also, what kind of dr diagnoses this, a neurologist or immunologist?

Now for the interesting part, he has CVID and has been on IVIG (35g every 3 weeks) for nearly a year with no improvement in any of his symptoms. It hasn't helped him symptomatically or to avoid infections but it did bring his IgG levels up to the 700-800 range. He hasn't been off antibiotics at all in the last year without a relapse of ear infection, sinus infection or strep. Would the lack of symptomatic improvement with IVIG rule out CIDP?

I am hoping to find someone who can answer my questions and I thank you for any help.

Hi.

Sorry I haven't replied sooner--I just joined.

Some of your son's symptoms could be related to CIDP (balance, inability to take a deep breath), some would be unusual for CIDP (headaches). Although no two people with CIDP are affected the same way, symptoms fairly common to all of us are pins-and-needles/tingling in the extremeties and fatigue. I'm not a medical doctor, but from the symptoms you mention, I would tend to keep looking rather than settle on CIDP.

CIDP is normally diagnosed by ruling out everything else. Generally, your son would need to see a neurologist, since this is an autoimmune attack on the peripheral nervous system. The neuro would run nerve conduction studies to determine if there's a slow-down in the speed of nerve impulses. He would also do a lumbar puncture for elevated protein, and blood tests. An MRI would help rule out MS (which has similar symptoms to CIDP), but would not otherwise aid much in a diagnosis of CIDP.

Whereas MS affects the central nervous system, CIDP hits the peripheral nerves; thus, central nervous system involvement in CIDP is unusual (although there are a small percentage of CIDPers with brain lesions--not sure if it's from the CIDP or just a coincidence).

IVIg is one of the standard treatments for CIDP, but there are occasional people for whom it doesn't work, so you son's lack of response to IVIg wouldn't rule out CIDP.

Hope this helps.

Deb