Category: Chasing a cure

We Interrupt Your Regularly Scheduled Program For This Important Announcement

leg

This was one of those weeks where coming up with a topic to write about was a chore, and writing about said topic was tedious at best. For the better part of an hour and a half, I fought my way through writing about something my heart wasn’t really into, and trying to make it sound entertaining and relevant. When I was done, I had my typically shitty first draft completed, and was poised to make it look pretty and shiny today.

Then the obvious hit me like a bolt of lightning.

As you know, most of my recent posts told the story of my decision to dip my toe into the medical marijuana world, and what the experience was like. A lot of readers were enthused about the journey I described and asked for updates. My plan was to go back to that subject in a month or two, but after I had closed the file on the draft I was going to polish today, I had an epiphany about something that happened within the last week.

I am walking better. Better than I have in years.

When I had my last flare, the symptoms moved from just below my knee to my lower thigh above the knee. This was a game changer because I no longer had a firm foundation below me. My leg felt like a broken kickstand, one that could easily wrench violently to one side, tearing ligaments in the process. My limp became more pronounced, my balance became infinitely worse, and the leg felt like it didn’t belong to me. Performing any physical task became more difficult and potentially dangerous, as my tales of woe about snow removal this past winter described.

But as I rose from my recliner to grab a can of seltzer from the fridge last Saturday evening, it occurred to me that I was actually bending my knee as I walked, and moving the leg in more of a normal walking motion rather than having the knee locked, and swinging the leg forward by the hip. The knee felt strong and stable, which meant the entire leg felt more controllable, and I felt steadier on my feet.

Keep in mind I was a little buzzed at the time, compliments of my PM dose of CBD oil, so I asked an impartial observer, Kim, if it was my imagination or if I was actually walking better. After watching me move around the living room and head back to the recliner, she agreed it appeared that way.

Talk about a holy shit moment!

I wasn’t going to take this as gospel though, because part of me was wondering if I was over dramatizing something because I wanted to justify taking the new med. It just so happened that I had my quarterly neurologist visit two days later, and I told Dr. G. on Monday that it felt like the leg had improved, that I had reclaimed some strength and control in the knee, and was walking a little better as a result.

He put me through the paces, and lo and behold, it wasn’t my imagination. I’m not going to bore you with the details of what the “paces” are, but he confirmed what I suspected. There was measurable improvement.

That assessment was reconfirmed yesterday, two days after I saw the neurologist, during my annual physical. My PCP put me through similar paces and drew the same conclusion. There is therefore no doubt I’ve regained some territory from my MS foe, and the functionality within my leg has improved to where it was before the last flare.

Great news, yes, but let’s not get carried away. What I’ve described represents a subtle, incremental, improvement. If I were to place a percentage on how much better I think I am, it would not exceed ten percent. I still need my cane, my balance still sucks, and I still can’t run, jump, or even consider going on a dance floor. I remain disabled.

However, walking with the cane doesn’t take as much effort, and I can actually walk faster and in a straight line with the cane instead of meandering from side to side. I can also lift the leg a little where before I had to grab it around the thigh or calf to lift it, particularly when getting into and out of my vehicle.

Most importantly, I have increased confidence in my ability to do stuff, where before I shied away from tasks for fear of falling or hurting myself. I’m actually looking forward to resuming my exercise routine, and am curious about how the leg will feel when I push myself.

After years and years of things slowly getting worse, this is the first time something sustainable seems possible. So what caused these changes?

I started taking Super Biotin about seven weeks ago, and the CBD Oil began a little less than three weeks ago. These are the only new items that have been introduced into my routine. I’m sure the CBD oil is at work here, because I was on Super Biotin once before for a longer period than the current six or seven weeks, and nothing changed at all. I don’t think it is any coincidence what I have experienced occurred shortly after I began taking CBD every day.

Is the improvement here to stay? Logic says no. In the past, I experienced improvements when new treatments or a new medication was introduced, but they were short term in nature, and faded as my body got acclimated to them. I’m therefore trying not to get too giddy about this recent development. While I would be sad, it would not shock me to see these changes regress over time, and have the weakness climb back above the knee.

Hopefully I am wrong, but I’m not dwelling on this possibility. Instead, I’m cautiously optimistic for the first time in a long time that maybe, just maybe, I’ve found something will actually help control my symptoms, and am enjoying every minute of this new feeling. I am a true believer in the benefits of medicinal MJ for MS.

As a matter of fact, I’m going back to the dispensary Saturday morning to re-load.

Thoughts On Pharmacology and The Search For A Cure

Cash

In the ten years since I was diagnosed, I have tried eight different medications to manage my symptoms and progression, and never gave much it much thought or questioned my choices until the last few weeks. What changed? I’ve noticed a number of posts from various bloggers about their experiences with the drugs they take for MS and other chronic conditions, and two truths have become painfully obvious.

The first is that pharmaceuticals are the primary, and in some cases, the only option provided to us. The second is that trying these drugs is similar to purchasing a lottery ticket, in the hope of hitting the jackpot, only to be left with a hangover.

I’m not anti-drug, just anti Big-Pharma. After all, doesn’t it seem ludicrous that the entire idea of legalizing marijuana, medical or otherwise, still meets a ton of resistance as it’s labeled as a gateway drug, yet scripts of opiates are dispensed like candy, creating an addictive culture that turns to heroin when the supply is cut off, and the outrage is muted? Don’t get me started.

As I was saying, I’m not anti-drug, and there have been a handful that have helped me, but let’s be honest. Even with the drugs the FDA has approved, we’re still participating in a never-ending clinical trial, serving as lab rats or human petri dishes for Big-Pharma and the medical community in general.

Is that a harsh assessment? Maybe, but we willingly take stuff we know may not do a damn thing, and make us feel like shit in the process, but don’t think twice if that occurs, and gladly move onto the next option. Maybe that option will be better, but if not we keep trying other things until we find something that works even a little. After all, what’s the alternative?

I know that the stuff that I’ve been putting into my body all these years isn’t healthy. The chemo I took for over eight years isn’t good for the liver, and necessitated monthly blood tests to ensure my liver enzymes weren’t all fucked up. I know Ocrevus isn’t much better. So yes, I do think about what the long term health consequences of what I’m doing might be, but that does not get in the way of continuing the path I am on or trying something new. It’s a safe bet I’m not the only person who feels this way.

That may sound desperate to someone not living this life, and I know holistic options exist, diet for one, that might be worth pursuing. But I’m brainwashed like everyone else in thinking that pharmacology is the best option. Either that or I’m following the gospel of my neurologist without reservations. I trust him and think, perhaps foolishly, that if the drugs were doing more harm than good he’d tell me.

Having said that, I believe that pharmacology is not going to provide the ultimate solution if a “cure” is ever discovered. I’m of the opinion that if a cure is out there, stem cells will provide the key. After all, if you’re going to try to regenerate myelin, I doubt a pill is going to do it. Doesn’t it make  sense that something organic will create something new and better? Be that as it may, I’m not holding my breath hoping that a cure will either be found in my lifetime, or happen before I’m primed for the Dirt Nap.

As far as brain lesions are concerned, I don’t think they will ever crack that nut. That organ is the final frontier in the medical community, and we are light years away from truly understanding how to treat it.

I suspect all of us ultimately reach a point where we’ll get off the medical treadmill of procedures, injections, infusions, and pills. I know the day will come where I’ll jump off and focus on rest, diet and more holistic approaches. But I will first have to conclude the results no longer justify the effort, and am tired of going to hospitals, tired of getting poked, prodded and stuck, and tired of the expense.

Reading the posts I mentioned also made me reflect on the economics surrounding finding a cure for anything. More specifically, there are millions being poured into research through grants and donations to find the elusive cure for various chronic and deadly diseases, cancer and MS to name two,  but don’t you sometimes think it isn’t in a lot of people’s best interest to actually find one?

If Big Pharma found the answer, which I doubt will happen but let’s stay on that thread, then that premise doesn’t ring true. I mean, can you imagine what they would charge for the magic pill or shot that prevents cancer or cures MS? They could name their price and nobody would flinch.

But what if, as I believe, the answers do not lie with pharmacology. What would happen to the big organizations that champion the chase for a cure? How much would they lose in funding and donations?

My intent is not to imply that those who run these groups are only in it for the money, but let’s be realistic. Isn’t it in their best financial interests to keep chasing that cure than to actually discover one? After all, a significant percentage of revenue goes to overhead for some of these organizations. What happens if the money runs out or the flow is reduced to a trickle? Maybe I’m in a cynical mood tonight. I’d like to think it wouldn’t matter, but isn’t that naive?

It’s an interesting discussion, but probably pointless. After all, the medical community would actually have to find something that works, and in the immortal words of the neurologist I saw at Johns Hopkins during the early stages of my MS journey, when has medicine cured anything?