Reply To: HELP! FEEL SO LOST IN ALL OF THIS

The reason I understand that contrast is used for a brain and spinal MRI is to look for MS lesions. Here is what the MS society says on the topic:

“A contrast agent containing gadolinium is often injected into the vein before an individual undergoes an MRI scan. Gadolinium is used to identify areas of active inflammation that can be associated with MS. ”

I too had some disc degeneration and was originally treated for disc issues before the problems became more widespread and full body neuro. But once I was with a neurologist and had a CIDP diagnosis, the neuro said that the disc issues were not nearly severe enough to cause the nerve issues I was having.

It seems that that EMG/NCS could be done on all limbs. My first one was legs only, my second one three limbs. I wish it had been all, especially for insurance authorization purposes. Many insurance companies are looking for issues in a certain number of limbs and incomplete tests don’t help this (for IVIG approval). Also, CIDP is usually considered bilateral, but variants can be asymmetric and knowing what you’re dealing with would be helpful, in my opinion.

A spinal tap can’t lead to a definite diagnosis for CIDP, but elevated proteins can contribute to a diagnosis. But 20% of CIDP patients have normal levels. The spinal tap is helpful to rule out other things too, since the CIDP diagnosis is largely one of ruling out other causes.

My neuro didn’t even run CRP and doesn’t use it at all in my case. We run it occasionally at my request.

My neuro has never put me on steroids and has been very against them in my case. Even though IVIG is more costly (both financial cost and time intensive), he feels IVIG is a more appropriate treatment for me than steroids. He thinks it’s safer and has less serious side effects than steroids. But steroids are cheaper and more accessible and many people do very well with them. There is one man on one of the facebook groups who’s always pointing out that he’s almost symptom-free on steroids, no IVIG.

Totally agree about the weird sensations. I’ve had cobweb feeling, diminished sensation and the “sensation of sensation” if that makes sense. Their tests that search out complete numbness don’t really identify all of this other weird stuff going on. I try to ignore these minor sensory issues. I’m more concerned when I have weakness or when lack of sensation is affecting balance, walking, uneven surfaces, etc. I’ve even gotten to the point that my legs go numb during exercise, but if it’s not affecting balance I just kind of ignore it. It’s strange, but the motor nerves seem to be able to do their thing even if the sensory nerves are out to lunch. I just trust muscle memory, and know that if I ever fall that I need to re-evaluate. I realize that for many people this isn’t an option and their numbness is much more disabling.