Bob and I went to see his Neurologist yesterday. This is the same neurologist he has been seeing for four years for his CIDP. CIDP stands for Chronic Inflammatory Demyelinating Polyneuropathy (yeah, I had never heard of it before, either, it's pretty rare).
Bob was diagnosed with CIDP in 2007. His first symptom was a sort of crick in his neck that would not go away. After months and months of various doctors, x-rays and MRI's, and misdiagnoses (one of which was torticollis, which he got treatments for, to no avail) and a trip to Gainesville to see a specialist, he was finally properly diagnosed. CIDP is an autoimmune disease. Basically, what happens is that one's own immune systems goes wacky (that's a technical term, ha) and begins to attack healthy cells. In the case of CIDP, the immune system attacks healthy nerves, literally stripping off the myelin outer sheath of the nerve (hence the term "demyelinating"), causing extreme pain and muscle weakness. Bob's CIDP started in his neck and progressed to his legs and ultimately began attacking his arms. It had gotten so bad that Bob could no longer work and, in 2008, he applied for and was granted Social Security Disability. CIDP can happen to anyone. It happens when the immune system becomes overwrought from fighting something (i.e. a prolonged illness or, in Bob's case, an allergy.) The culprit, in Bob's case, was a drug called Vytorin (a statin drug) prescribed for high cholesterol. Turned out, he was highly allergic to this drug. There is no cure for CIDP, however, there is treatment. One of which is IV-IG, in which healthy blood plasma from donors is transfused into his blood in order to boost his immune system. The other is a drug called Cell Cept, which is usually given to organ transplant patients, and calms the immune system down. Bob was on both of these before his surgery and subsequent stroke in October.
Anyway, back to the present story, we went to see his Neurologist yesterday. Bob's last treatment for CIDP was before his stroke, so part of the reason to see the Neurologist was to start up IV-IG treatments again. However, after briefly examining Bob, the Neurologist looked at me and said he saw "no sign" of CIDP.
I said, "You mean, it's in remission?"
He said, "No."
I said, "It's gone?"
He said, "No."
OK, now I'm totally confused. I said something to that effect. He said, "Well, look at his neck. He's holding it up much better. That means the CIDP is no longer attacking the nerves in his neck. So, let's wait and see. Right now, I see no reason to start CIDP treatments. Let's concentrate on rehab for his stroke and come back in four months."
Well! How about them apples? Is it too much to hope that the CIDP is really gone?
If you read enough about CIDP, and believe me, I have, you will find that sometimes the disease goes into remission for months or even years. Sometimes, the disease simply disappears.....and no one knows why.
Could it be that the stroke kicked Bob's immune system in the butt and got it working right again???????
Is it too much to hope for a silver lining in this dark cloud?
Other than that, I asked the Neurologist about Bob's arm "plateauing", but he was pretty noncommittal about it. "Could get better, let's wait and see." And I asked about his mysterious mouth pain, so he examined Bob's mouth and told me it looked like "dry mouth" and I should get some grapeseed oil to smear on his gums. (GAAA! Another Doc, another diagnoses!) I'm taking Bob to his old Ear, Nose, Throat doctor (aka Dr. Doom) on Thursday to see if we can get to the bottom of this mouth pain thing.
Well, it's time for Bob's first tube feeding, so I'll sign off for now. Thanks everyone for your comments and support.