Have I mentioned that I really don't enjoy mysteries?
It's the one genre of book that I almost never read.
And I certainly never expected to become such a huge mystery to myself or so many doctors.
My personal mystery took a little twist yesterday when one of the infusion nurses gave me a copy of the blood tests I was awaiting from the hematologist. And despite doing a bunch of reading online trying to figure out the test results, I'm still pretty confused.
It doesn't help that the tests are apparently unusual enough that my favorite LabTestsOnline.org doesn't include them. So I googled, refined my search terms, and came across a number of sites that mention them. Unfortunately, most of them are research journal articles that are a bit beyond me at this time.
The hematologist told me he ran these tests to see if my monoclonal gammopathy of undetermined significance (MGUS) was causing any nerve damage. I'm pleased he did, since I've been having neuropathy in both hands and my left foot/leg.
The MAG Antibody IgM (Elisa) test was normal (255 and anything under 999 is normal), as was the SGPG Antibody IgM (0.20, anything under 0.99 is normal) and the ANNA IFA Screen, Reflex (<1:10).
But then there's the series of four Ganglioside tests: GM1 (26, negative); GD1a (50, 30-50 weak positive); GD1b (54, 51-150 is positive) and GQ1b (19, 0-29 is negative).
Here's what the lab result sheet says about the two I'm in the positive zone for:
"GM2 and GD1a antibodies have been associated with Guillain-Barre variants, motor neuropathies and sensory demyelinating neuropathy, while GD1b has been associated with sensory neuropathy."
(My test results don't mention a GM2, fwiw.)
An article I found that was somewhat helpful said this: Antibodies recognizing GD1a, GD1b, and asialo-GM1 are found in association with motor and sensorimotor neuropathies, as well as ALS and GBS.
GBS, of course, is Guillain-Barre Syndrome, which I'm pretty sure I don't have. ALS is amyotrophic lateral sclerosis, aka Lou Gerhig's Disease, which I'm positive I don't have.
I see the hematologist again in a month to see whether the iron infusions I'm getting are raising my ferritin levels, and I'll definitely ask him about that then. And I'll bring a copy to my neurologist appointment on Monday and see what she thinks.
Speaking of the iron infusions, I seem to be getting mild allergic reactions to them. After the first one, I had a weird feeling -- tightness, slight difficulty swallowing -- at the base of my throat. I took Benedryl and was fine. After yesterday's infusion, I had tingling on my face and the tightness in my throat again. The tingling felt sort of like it feels when novocaine is wearing off after a dental treatment. I also developed a bad headache during the infusion, but I don't know that it's related. I'm a little nervous because it's a stronger reaction than the first day, and I worry it's going to increase the next time.
I'm waiting for a call back to see if they're going to make me abort the treatments.
There was a really neat thing that happened during yesterday's infusion. The center is a combination hematology/oncology clinic, so most of the patients are cancer patients. I was reading my email in my recliner when all of a sudden there's a bunch of clapping and singing, kind of similar to what happens in many restaurants when you tell your server it's your birthday. But they weren't singing happy birthday -- they were singing a song congratulating a young male cancer patient for finishing his last chemo treatment. All the nurses and MAs were gathered around his chair and then gave him hugs after their song and wished him well.
It was rather touching, until I heard him telling the patient in the chair next to him that his cancer had shrunk but wasn't gone so his doctors were going to do a "wait-and-see" what happens over the next couple months. He looked like he was in his 20s, and that is just too young to have a cancer that won't go away. :( I'm guessing chances are good that they'll be seeing him in the infusion center again someday. :(
Extreme Fatigue - Exhaustion. Fatigue. Lethargy. Weariness. It's so much more than just being tired... And it hasn't been this bad in a very long time... it's so intens...
4 months ago