Wednesday, April 15, 2009

The Mystery Continues ...

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 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. :(


Shiri said...
This comment has been removed by the author.
Shiri said...

Trying again... too tired and many typos! As an RSD/chronic pain/weakness/latest guess of a diagnosis here patient, I completely understand the hating of mysteries! I'm a huge reader, and even before this disaster of a health situation, I hated them. The one thing is, normal mysteries don't have a kick-ass protagonist with amazing strength. Yours does. I hope you find at least that reassuring.

Aviva said...

Aw, thanks Shiri!

Sorry you're in a similar boat when it comes to figuring out what's causing all your problems. :(

But your comment made what was a really frustrating, depressing day quite a bit brighter. Thank you for that!!

Btw, if you're on Shelfari or Visual Bookshelf, please friend me and we can compare reading histories. (I have a much deeper shelf on Shelfari, which I've done longer, than Visual Bookshelf, but I've been keeping Visual Bookshelf more up to date, fwiw.) You can search for me at either with my legal name: Aviva Brandt.

Shiri said...

I wish I were! I use GoodReads instead. We've definitely got some in common, though. Jodi Picoult, of course, Life Disrupted (which I think was how I found you), Snow Flower, anything by Kingsolver, Water for Elephants (I was in youth circuses as a kid and LOVE that book), etc. Have you ever read The Time Traveler's Wife or The Summer Guest? It seems, from your books, like you would like them. I love recommending books :).

I'm glad my note made you feel a little better. Your diligence and attitude are astounding to me, so you deserve to know that.

Aviva said...

Hi Shiri!

I LOVE the Time Traveler's Wife! I will request The Summer Guest right now from my library! I'm on GoodReads too, although I don't keep that list updated. But they have the *best* monthly newsletters, so I keep my account there just for those recommendations! I started on GoodReads, but moved to Shelfari when it turned out most of my friends were there. But Shelfari doesn't seem to update properly on Facebook, so I ended up joining Visual Bookshelf there so I could exchange book lists with folks there. :) I just finished reading Rose Variations by Marisha Chamberlain, and although it doesn't make my list of Best Reads Ever, it was really fascinating once I got through the first third or so. :)

Shiri said...

So many books and so many ways to track them! I'm actually pretty good about GoodReads, so I think if I started another (even tried on Facebook) they would both be less than half cooked. I'll just have to track your books here!

Have a good night, and congrats on the weight loss!

Miss Waxie aka A Comic Life, Indeed said...


I am in all honesty a complete novice when it comes to your site (which I so love and am adding to my blogroll at - my comic that takes a comic look at life with chronic illness) and to your disease, but i hope you won't be offended if I bust out a little "here's what i think you should do" advice (I know, the worst kind right?)

As you said, you probably don't have GBS, as that's a serious, suddenly catastrophic kind of thing that lays most people up in hospitals with in 48 hours of onset. However, in your readings did you happen to come across GBS's sister, chronic inflammatory demylinating polyneuropathy (CIDP)?

Unlike GBS, which remits under treatment and leaves your body alone (though residuals can last a life time), CIDP is well, chronic, and can relapse and remit at will.

I, too, was a medical mystery for years. My whole life. Finally, a brilliant neurologist ran a thousand blood tests and did an EMG that showed up as abnormal - while my previous neuro's had done this, they said that none of those abnormalities, while strange, pointed to any sort of disease thus, there was no treatment they could really offer.

THIS neurologist said "i think you have some kind of varrient of CIDP", put me on IVIG, and suddenly my life truly changed. I couldn't remember ever feeling such energy and well, such a feeling of well being. (that is, until my rhuematism and lupus set in, but that's another story!!!)

Anyway, if you'd like to know more about this, please feel free to contact me. I have no idea if it's your answer, but given those antibodies, it might not be a bad place to keep looking.

- Miss Waxie

Aviva said...

Miss Waxie!

What a coincidence! I just discovered your blog yesterday thanks to Diane at A Stellar Life, and LOVE it! I signed up for an email subscription, in fact!!

I am NEVER offended by people who offer suggestions for what I should ask my docs to consider and look at. My internist especially actually appreciates the suggestions I've gotten here and elsewhere, which have helped identify my iron and Vitamin D deficiencies.

I'll have to do some reading on CIPD, which I think I saw a reference to when I came across GBS (which I keep thinking stands for Group B strep, since that's the abbreviation I remember seeing for it when I was pregnant :). I need to do a post now about my visit to the neuro yesterday, where she didn't mention that but did discuss wanting to do some more tests, including a spinal tap and some nerve conduction tests in the near future. So we'll see!

Thank you again!!

Shiri said...

Hey ladies, jumping back in here! Miss Waxie, can I ask about your EMG results? As someone in a similar boat, I've wondered about CIDP for a while. My EMG results were mostly normal (something abnormal, but I don't remember what, I have to check) and I got a similar answer as you did. I was going to have a biopsy but my pain doc is worried about it causing further injury. CIDP fits my symptoms to a T. What kind of abnormalities did your EMG show?

Also, I love your blog!

Miss Waxie aka A Comic Life, Indeed said...

Aw thanks to both of you! Aviva that is so funny! I'm so glad and honored you subscribed of course :)

A little more info on me and CIDP for you and Shiri:

I am embaressed to say that i re-read the EMG report that dxed me, put it in my car to bring to the new neuro tomorrow, and now cannot for the life of me remember everything that i meant to tell you. (typical, right? still i felt i owed you some response and will comment again if I find I left anything out tomorrow.)

The main thing that pushed my case into CIDP dx were the delayed and absent F waves on the NCV section of the EMG. I believe there was also a block found.

Basically, the test can't say "you have cidp" but can diagnose nerve damage and the type of / pattern of damage is indicative of a certain disease. (medicine is complicated, man)

For more info on CIDP and diagnosis, a great site is

Of course, you can always check out the GBS/CIDP foundation:

Hope this answers some of your questions, but let me know if you have any other questions. Hope you're both well!!

- Miss Waxie