juicing again

Walked in this morning for the third and final day of this course of IVIg, and Michelle (Jamie has left the position, so Michelle is running the "juice bar" while they find a replacement) greets me with a friendly "How are you?"

"It's fantastic! I woke up this morning with full strength in my hand, and the side effects had all just vanished .... APRIL FOOLS!" Maybe it was funny at the time. Maybe you just had to be there.

I should hardly be surprised. The side effects started showing up an hour or so after the first day of juicing, and have steadily increased. Hard to tell if they are slightly less severe than last time as a result of the premedication with Prednisone - I think it has helped a bit. Will be watching it closely over the next few days as I continue with the Prednisone (plus regular pain medication), and then taper off for a few days. On the bright side, there is a slight improvement in hand strength, and it isn't collapsing under any pressure the way it was a few days ago.

So having established that the juice does help (just that it doesn't quite get on with me), this now turns into a trial-and-error exercise in working out how to manage the side effects: headaches, neck soreness, sensitivity to light and loud noises (like kids crying and shouting). It looks like a mild case of aseptic meningitis (which is what they suspected the first time around), which is usually treated with: steroids! So for each juicing, we will attempt to tune the Prednisone dose to one that works, and hope that other things remain stable for a period of time.

Of course things would be boring if the Prednisone didn't have its own side effects: a touch of nausea, sleeplessness (although I felt quite tired this afternoon), edginess (but who wouldn't be in my condition?) I'm thinking the best thing to do is head off to a spa for a few days of R&R after each juicing. Do you think I can get a prescription for that?

and the results are ...

I really need to learn to adjust my expectations. The spinal tap was supposed to explain/reveal so much about specifically what condition I had, and the reason behind the side effects. Instead, the results are inconclusive, and I am left feeling flat, exhausted (is it the hot weather, the return to work, or a side effect?), and as uncertain as ever.

The protein levels were elevated, but not sufficiently to indicate CIDP over MMN. There was slight inflammation, but not sufficiently to confirm aseptic meningitis. Could be that the meningitis was more clearly indicated if we had done the spinal tap sooner after the initial IVIG treatment (it's been over six weeks), and now we are seeing only a residual inflammation. So, to summarize the test results in lay-speak: "it might be this, but on the other hand, it could be that, and the side effects might have been because of the other".

Bottom line: my neuro is putting me on a short (three week) course of Prednisone in the hope that it might reduce the inflammation, and therefore the headaches. They may also have an effect on the primary condition. And I am left still wondering, and have to pick up some more Panadol - the bulk size *sigh*.

that was spinal tap

A spinal tap, or lumbar puncture, is not a pleasant experience, although in hindsight, like so much of this, the anticipation is far worse than the procedure itself. It was done as a day procedure, and not content for just my wife to accompany me, my mother had to come along as well (despite anything either of us could say to dissuade her). In the waiting area, we spotted what looked like a Greek family accompanying someone who was being admitted. They were a party of six plus the patient, so I guess my "entourage" was relatively small.

The whole thing is quite simple, and done under X-Ray. So I'm lying there on my side, and there's a big X-Ray apparatus that slides over the top of me, and the radiologist is able to see live pictures of exactly where to put the needle in so he gets the right spot. Fortunately, he did it quite well, and it worked first time. Indeed, all the of hospital staff were fantastic - very friendly and helpful. Funny how all of the people in the room put on four-part X-Ray "flak jackets" covering every part of their body while I'm lying there in just a gown.

It takes several minutes for the cerebrospinal fluid to leak out of the hole they make, so I'm making small talk with the guy to pass the time. After it's finished, I suddenly get all sweaty and shaky, but this passes after a few minutes. Perhaps the relief of it being over. I had been anticipating this for several days since my appointment, and it has probably contributed to slightly worse headaches than usual.

Afterwards, I have to lie flat for two hours, just in case the hole in spinal sac containing the fluid does not close properly. Fortunately, this appears to be OK, although my headaches have been worse since the procedure. The information sheet advised of possible headaches after having a lumbar punture - is this a side effect resulting from the procedure to help deal with the side effects? The recent heat wave, and my return to full time work after a break may also been contributors to this. Should get some results in a couple of days, which will hopefully give answers on some burning questions, and perhaps an end to these headaches!

more tests

Had a review with the Neurologist today, which confirmed that remains some increased strength in my hands after the initial IVIG treatment. It's not back to 100%, but it's better than it was a couple of months ago. Being just the first treatment, we must now sit back and see how long it lasts.


Some questions remain unanswered, like why I still have headaches, and he suspects that I may be suffering from an uncommon side effect of IVIG - aseptic meningitis (aseptic as in not the nasty form of meningitis that is really dangerous, but rather the benign one that gives headaches instead). There is also still some doubt as to whether what I have is MMN or actually CIDP. He expressed this possibility earlier, because of the way certain nerves were affected, and this doubt was also indicated by comments from another doctor who reviewed my case, and asked for further information.

So the obvious thing to do is to stick a needle in my back and extract some fluid - the magical cerebrospinal fluid which contains (we hope) the answers to the mysteries that lurk within my body. The lumbar puncture, or spinal tap, is something I've seen plenty of times on TV in medical dramas. I guess the only good thing about having one is that I won't see it - I'll be facing the other way trying to think of something distracting. Do you think they'll let me listen to my iPod during the test? My fear of needles keeps being tested by all these damn tests and treatments, and is something I will just have to get used to.