Wednesday, February 2, 2011

Well, That Was Interesting ...

I headed over to OHSU today for a skin biopsy and figured I could have some labs done while I was there, even though the ordering doctor doesn't work there. 

And they were perfectly happy to do it, so I killed two birds with one stone. 

The biopsy involved taking tiny samples of skin at my ankle and my hip, and the pathologist will study the nerves in both to determine if I have small-fiber neuropathy. My limited understanding is that the biopsy can confirm the type of neuropathy, but a negative result does not entirely rule it out. Story of my life. :-)

I also had nine vials of blood collected for a laundry list of bloodwork: HIV, Hepatitis C, Vitamin B6, Vitamin B1, Vitamin E, Copper, 2-hour glucose tolerance test and, as an added bonus, a special test that has to be sent to the Mayo Clinic for processing looking for transthyretin-associated familial amyloidosis. Most of those tests have been run before. I laughed when I saw the HIV test on the list because that was one of the first things they tested me for when I was admitted to the hospital back in 2007. I'm confident that I will continue to be negative. :-) 

So my appointment for the biopsy was at 12:30 p.m. I knew I had to be fasting for the blood work, but didn't have any detail about what they were testing so it was a surprise when I learned I needed to hang around for two hours for the glucose test (which I'd done when I was pregnant). 

As I've mentioned before, I sleep pretty darn late most days, so I got up around 11 a.m. and presented myself at the lab about an hour later. I'd tucked a banana in my purse and had pretzels in the car, and intended to eat the banana on the way to another floor for the biopsy. But no. 

I finished drinking the 75g glucose beverage at 12:14 p.m., went up for my biopsy, and was back in the lab reading Grisham's latest book before 1 p.m. At 2:14 p.m., they took the second sample, and I was peeling my banana before I got out of the lab. 

I got home and had a late lunch (mid-afternoon snack?) about 2:45 p.m., and was reading some email when the phone rang at 4:20 p.m. It was a doctor from OHSU's neurology department (which is where I had my biopsy done) telling me it was very important I eat some sugar right away -- did I have a candy bar I could eat? 

Turns out that my blood sugar level was 49, and anything below 60 when fasting is considered dangerously low. Of course, that 49 was two hours after having the highly sugared drink, which means my glucose levels apparently should have been about twice what they were. 

I have absolutely no idea what all that means, except that it should rule out diabetes. (Diabetes is the most common cause of small-fiber neuropathy, and since I'm overweight, it is a common thing for new doctors to want to rule out on me. But the only time I have high blood sugar is when I'm on high doses of steroids, and as soon as I wean off, my levels come back down.)

I don't expect them to add hypoglycemia to my list of diagnoses based solely on this, but I've been told since college I was "borderline" or mildly hypoglycemic.

Anyway, I was rather impressed by how quickly I got a call from OHSU, particularly since I don't have a treating doctor there currently so they definitely had to pass my paperwork around to figure things out. Wish I'd noted down his name ...

All of today's tests, as well as an EMG and another tilt-table test of my autonomic system that will be done over the next six weeks or so, were ordered by my newest doc, a neurologist with a neuro-muscular sub-specialty. I was referred to him by the multiple sclerosis doc at OHSU that I saw back in November.  

And that's all the news that fit to print ... and it goes without saying that I'll share any interesting lab results when I get them, but the biopsy is expected to take many weeks.


WinnyNinny PooPoo said...

Go see a neuromuscular specialist in April myself. There is some amyloidosis in my mother's family so who knows??

Wow, glad you took the glucose tolerance test - that's a hard one to catch!

Aviva said...

Hi WNPP! :-)

I don't think I have a family history of it, but I don't have detailed family medical history beyond my parents, and even that is somewhat sketchy. :-( I am an Ashkenazi Jew, though, and apparently there's a higher incidence of it among Ashkenazi Jews than the total population. (I also found out last year that I'm a carrier for Gaucher's Disease, another one that has a higher-than-normal incidence among Ashkenazi jews.

The funny thing? When the neuromuscular neuro asked me, "Where are your people from?" my initial answer was: Chicago. :-)

Aviva said...

WNPP: Oops! Clicked publish before I meant to! Good luck with your specialist in April! I hope it's helpful for you! So far, at least, I've been impressed how thorough the guy I saw was. When they sent me the lab order, it included a page of his notes where he put all the findings and test results he thought pertinent in one place, including several things I'd totally forgotten about. He had clearly not only requested my records from all the various specialists whose names I gave him, but really went through them thoroughly, including lab results and not just general impressions. We'll see how it plays out -- he and I had some amusing-in-hindsight communication issues, but I like how thorough he's being and he vowed to leave no stone unturned while acknowledging my desire not to undergo unnecessary expensive tests.

q said...

So impressive that the med ctr got back with you so quickly. I didn't think that happened anymor!

I'm glad that the new neuro is sending you for an updated battery of tests. I'm convinced this is your path to more Answers!
It's about time that you have a serious doctor who doesn't give up!

I'm so hopeful and happy for You!

WinnyNinny PooPoo said...

Well, one advantage and disadvantage of being in a smaller genetic grouping it that some diseases are easier to find. Pretty cool tho having a heritage that goes back thousands and thousands of years. So many of us have a disconnect from where we came from.

I had an Aunt who had parents who were cousins (distant but still cousins) and then inherited a condition called Wilson's disease (a problem with copper metabolism) that both parents have to be carriers to inherit.

Sounds like you have a winner with this group!!! Hoping for answers!

Pissed Off Patient said...

Wow, that is interesting. I hope this yields some answers for you.


Anonymous said...

Well, that WAS intesting. First, I hope that you will get good reports from all your tests. But, I must tell you that I just spent quite a while followwing links after looking up transthyretin associated familial amyloidosis. I had never heard of it so went searching. After that I saw a link about Ashkenazi Jews and found out so much about that religion...I was fascinated! Thank you for the lessons!


p.s. The comment about your people coming from Chicago was priceless!