Ok, I have been on the complain train for a bit too long, but this by far has been my version of the bodily train wreck. My body, almost all at once has given me the swift kick in the ass whether I needed it or not. So, fasten your seatbelts cause your about to board the complain train, destination unknown.
First stop, a little known town known as plantar fasciitis . A painful stop in this journey. I noticed about a month or so ago on and off left heel pain and burning, but not all the time. Mind you, I already have an issue with my left foot involving the fifth metatarsal that has caused it to drop and produce a painful callous, pretty gross right? This nasty callous makes it almost impossible to walk barefoot and I wear almost exclusively Skechers because of the memory foam. So back to the heel pain, wow has it exploded. The pain is unreal especially after I’m off my foot for while. The first few steps in the morning I compare to walking on hot coals (although I really wouldn’t know that for sure). The pain by the end of the days is excruciating and no pain meds seem to help, so I use a lot of freezer packs and bags of frozen peas, End result, off to the podiatrist and see what he can do.
Second stop on this journey is a well know city called Impacted, as in I have a very painful failed root canal that is also impacted. So not only is walking a challenge, but so is eating. I am in this moment awaiting clearance from my Primary doctor and I also needed it from my MS doctor to be IV sedated. Oh yes, knock me out! I’m not suffering anymore than I have to. But, my gosh, that pain and swelling is no joke either, again, I think my body is tying to get my attention, I am happy to report that my MS doctor has cleared me, but it wasn’t all good news. Which leads me to my next stop.
This stop I have to admit, is the derailment of this train. The very very unexpected news from my MS doctor, actually the nurse. So as she was asking some basic question, she told me they were going to clear me for oral surgery, good, wonderful. Then she hit me with the info that threw me….My JCV blood test came back positive, then she gave me the number 3.78. I almost didn’t comprehend her words. I have been on Tysabri successfully for three years and to this point tested negative with values that actually continued to decline. My last blood test in September showed my negative value was .06. What happened?!
As you could imagine, my head is still spinning. Tysabri is an excellent course of treatment that I was fortunate to tolerate well. I was told before using the medicine that there is a risk of PML, which is why your blood is tested every 3-6 months for the John Cunningham Virus. This is a virus very common in everyone but lays dormant in most. In people with various autoimmune diseases and people using Tysabri, the immune system is compromised or suppressed. JCV is a virus of opportunity taking hold when it finds the right time. Problem is this nasty little virus can lead to PML (the whole word is too long to write at 5am).
The JC Virus is able to break the blood brain barrier which then could lead to PML, which is often times the damage is irreversible to the brain and can also be fatal. Now I do understand that just because I have tested positive for JCV DOES NOT mean I will develop PML. I won’t lie, its on my mind.
Now I have yet another doctor’s appointment, this one is critical to me. I have so many questions about what treatment is next, how long do I stay positive for this virus, what should I watch for? It’s endless because now I am almost, but not quite scared. Fixing a tooth or fixing a foot is an easy process compared to modifying the progression of Multiple Sclerosis.
Although thats the end of the complain train ride, my journey has just begun. I’m back at square one with my MS treatment and I am feeling the affects of Tysabri leaving my system, which is fatigue and a little extra in the mood department. When I sit back and absorb all this I just say, ok, lets address one thing at a time, but its so much more than that. Again, its as if my body is rebelling, and in a sense it is. It’s saying no more Tysabri, go have your tooth pulled, and by the way, fix your foot.
Ok body, you got my attention, I’m listening.