I have really been contemplating how to put to paper my thoughts and experiences over the past three years. At the end of the day, I'm just not sure how to go about it, so I will simply start writing and see where this takes me.
Of course, after three years, the million dollar question is how am I? Personally, I am great, MS wise, it leaves a bit of room for improvement. So how have things progressed? I will take it back to six months post HSCT and start from there.
During the first year post transplant, everything went according to the scheduled recovery. My blood work slowly returned to its normal values and with, that my energy slowly returned. It was not always a smooth road though and with that I will segway into the first area I wanted to discuss. There is a debate among people who have had hsct whether they should have a hematologist or a G.P. follow them post treatment. For all of you listening, I would like to chime in on the subject. So what is the difference you ask?
Your general practitioner will typically order a cbc (complete blood count) along with TSH, T3, T4 etc. These are pretty good indicators for general blood health and give a fairly good global picture of how the leukocytes are performing post transplant. That's great, isn't it?? Well, yes, except when you bring in the expertise of a hematologist, he/she will not only check all of the regular stuff as above, but also every subset of blood type there is. As an analogy, it's kind of like if the GP checks out how North America is doing as a whole, the hematologist also looks at how the individual cities that comprise North America are performing. Why is this important? When I first transferred to my hematologist (a transplant specialist) my global blood work was looking really good. I was surprised when he got my blood work back, that several of the subsets of lymphocytes were still yet to come back to normal. They have all since then and look really good, however I would never have been the wiser had he not checked it all. Secondly, as in about 10% of post transplant patients, I had a protein show up in my blood work that isn't typically supposed to be there. Now, what's the big deal about this protein? Isn't that just going to make me look more like Arnold in his glory years? Well, when first found, this scared the living you know what out of me. Many sleepless nights. I had to do blood tests every 3 months as we watched and waited to see what it was going to do. Thankfully, it stabilized at a low level and as long as it stays this way, it's not a problem. As I say, it happens in about 10% of hsct'ers and should just fine in the long run. However, it needs to be monitored! I don't care how many 'doctors' we have in our hsct forums that like to give out health opinions, safety first! Get checked by a specialist who can guide you safely through the years following your transplant. That's my rant...moving on...
Now, onto MS. For the the majority of the first two years, my MS was actually relatively stable. No new lesions on the MRIs and outside of the recovery from the treatment, I feel I was doing quite well. Over the past year, however, my MS has reared its head and let itself be felt again. It has again, hit me in the same manner as it did before, targeting my legs and gait for the most part. I do use a cane for doing walks outside of the house. (I never used any supports of any sort prior to treatment). My spasticity, which I honestly feel has been a bit worse since the three month mark post hsct (steroids wore off), has been awful for the most part. I am back taking baclofen, fampyra ( for walking) and copaxone. Why copaxone? Simply because it has one of the longest running safety profiles. Can't say I enjoy the daily needles...
So in a nut shell, am I worse than before hsct? I can now say yes and that things are now changing again and while the transplant slowed my MS for a while, it has now come back...crap...shit...fuck...
The next question I get is would I do it again? This is likely the question I have thought about the most over the past few years. Of course, knowing that it did not work, I would tend towards no, but who knows where I would be if I hadn't. Would I be worse? Further disabled? I will never know the answer to that so a tough one to answer.
I think I would simply like to pass on my thoughts so if in some small way it helps those considering this treatment. I would summarize it as this...this treatment treats inflammation. There is no doubt it is the most effective treatment in the world, however, if you don't have inflammation, it is much less likely to work. Not that it won't...I know personally of people who didn't fit the ideal criteria and have had wonderful success. That being said, it is less likely. If, however, your MRI's constantly show all those glowing enhanced lesions...game on. That's what the chemo targets,and that is the demographic that all of the research says it works best for. Believe the stats. Your body does go through a lot for this (as well as many other components of your life), so my suggestion is, that if you are not a prime candidate for the treatment think long and hard. You may not like the decision you have to make, but it may be the correct one.
As for me...life continues on. My three wonderful kids and beautiful wife help me navigate these waters every day. I am still working as a chiropractor full time, but even that may eventually have to give. And if and when it does, I will still do my best to keep moving forward whether with legs or wheels. I maintain a positive attitude and while there is always those days you don't want to come out from under your sheets, I try not to allow them to come over me too often. Life has a lot to offer, it just may be in a different way than I originally planned.
Laugh often, love always, live life to its fullest!
Love from Ottawa.