So many tests, so little time

Day 3: Spent a few hours in the morning trying to move one of the tests forward, because it wasn't scheduled until the following week. While they give you a schedule, you are actually able to sit and wait for any of the tests on 'standby'. I am very surprised to find out they get a reasonable number of 'no shows' for appointments. Anyway, they are unable to help me, and eventually they take my mobile number and promise to call if they get an opening.

Later that day is the MRI - the appointment was a "double header", and was meant to go for two hours. After filling in the expansive questionnaire, they take me to get an IV put in because this will include contrast. Now I understand why they are asking me about kidney function as well as the usual questions about metal bits inside my body. Of course I get quesy but the IV goes in easily. Turns out the needle is made of plastic (it has to be, because you can't have any metal bits in the MRI).

Usually, I'm pretty good at lying flat and doing nothing for an extended period. First part is the right arm, and for that I'm lying flat on my back with the arm at my side. You really do lose a sense of time lying in that huge thing. Every now and then they say "this one will be 3 minutes" and off it goes, clicking and whirring and pounding away. Eventually, they slide me out and we do the next set with my left arm wedged up - have done this before and it's quite uncomfortable. Then they push some contrast material in through the IV, and do a few more in that position. Finally, I come out, and go back to lying flat and they do the right arm a few more times now that the contrast material is in. Turns out I was in there for over three hours of this stuff.

Day 4: I had managed to switch my lumbar puncture to Thursday instead of Friday, although when I get there, it turns out I was just switched to standby. So that's what I do, and eventually they call me. They don't do this under x-ray; just in a little treatment room with me lying on my side. It is an unpleasant experience, and along the way the needle nicks a nerve somewhere, and I very briefly feel a sharp pain down one leg. After it's over, I lie flat for a while, so as to let that little hole in my back close.

In between this and my next appointment, I manage to fit in a massage at the local spa. Nice to see there are some people in Rochester who make me feel good!

Later that afternoon is the last one on the list: a sensory test. This is the one I had kept trying to bring forward; must be popular! While I sit there, the operator tests my ability to feel various things: light touch, cold and heat on my nails, hands, and feet. This one is quite innocuous, and goes for about an hour.

Finally, all the tests are complete. All that's left is the review.

the waiting game

Well, the headaches have subsided to the point that drugs are either not needed or don't do too much, although my neck has been quite sore for the last few days. My urine has been pink on occassion, which is a little weird. Depending on who you ask, it can take anything from hours to days to weeks for the treatment to help. The internet is a terrible place for medical research - just way too much information. All it does is add to the uncertainty.

Being referred to a neurologist for weakness in the hand was a little scary; it just opened up a world of terrible possible diagnoses. It is interesting to note that the Hippocratic oath actually does not include the phrase "do no harm", which explains why doctors have some very painful tests and procedures disguised by innocuous terms like "nerve conduction study". That's actually medical for "a series of electric shocks through the arm that, if they were any stronger, would cause an involuntary reflex blow to the head of the person administering the test".

Lots of graphs and numbers led to an initial diagnosis of some damage to the radial nerve, possibly a result of some trauma. Because nerves are able to repair themselves, it was just a matter of waiting for this to happen, and the muscle weakness would go away. Unfortunately, after several months this didn't occur, and so we moved to the next battery of tests, starting with the MRI.

MRIs are lots of fun. It's not quite the way they show it on TV - these super magnets make a hell of a racket as they bang away. The old fashioned headsets you used to get on planes are the only thing that works to deliver music when you are inside; no metal is allowed.

That test found the thickening of the radial nerve in my upper arm, which explained the muscle weakness, and indicated this may not be what was first diagnosed. It's fascinating to think that the damage to that nerve in my forearm would cause weakness in my hand and fingers. This led to further blood work and another, quite painful, nerve conduction study, where they upgraded from electric shocks to needles (eeek) inserted into very sensitive parts of my hand to "listen" to the nerves. What is nerve-speak is for "ouch!"?

So, all of that led to the firm diagnosis of multifocal motor neuropathy. Which, in my case, is medical for means: "we know what you have, we don't know where it comes from. We know how to treat it, and think it will work, but don't know why". And so, I wait ...