I have an undiagnosed case of peripheral neuropathy and recently had a lumbar puncture. The first result back on that was a high level of protein (60, with normal range 15 to 45). At that time, my neurologists said they would probably do IVIg since the protein buildup might be immune related and, symptomatically, the disease seemed to be progressing fairly rapidly. All good from my perspective.

Then they repeated my EMG, which showed a slower rate of progression. Now they refuse the IVIg treatment. I pointed out that the EMG can’t measure small fiber changes, and that they haven’t done any autonomic tests. I also pointed out that the EMG team still thinks some of my symptoms are from a radiculopathy, which presumably wouldn’t progress at the same rate as the neuro symptoms.

They won’t budge on the treatment, which is pretty much the last potentially treatable thing it could be. They’re starting now to call it idiopathic, which I believe is Latin for “we’ve done all we plan to”.

Has anyone else had a similar experience or any advice to share? The change in my symptoms is maybe best described by “Last May I could walk 30 miles a week without foot pain, and now I can’t walk to the bathroom without it starting.” It’s not that bad so far, so I don’t want to be whining about it, but I find the trend frightening