My disease finally came out of the shadows a bit, exposing a part of itself. I have no question now that it’s in my brain, in the nervous system. This revelation started with the latest supplement I was given by the neurologist.
The new supplement I am taking is supposed to balance Nitric Oxide in the body. I understand very little about this, about what balancing Nitric Oxide is supposed to do for me, but I will learn eventually. What I do understand is that having the right Nitric Oxide balance is supposed to reduce inflammation. That’s about the limit of what I know.
I was given the new supplement with instructions to increase the dose to my tolerance level. The neurologist explained that I would know I had reached my tolerance when I felt tingling in my extremities after taking the supplement. Well, that’s not what happened. I started with the baseline dose I was instructed to consume, and noticed that I had a short burst of energy about an hour after taking it. This felt promising. In fact, I was pretty excited about it because Michael had a business trip to Miami coming up, and I wanted to just spend some time lying in the sun, truly having a good time not overshadowed by generally feeling like crap. I did, after all, lose my summer to my mystery disease, and I felt like it would be nice to just have a few days of that summer back despite the snow and cold temperatures at home. I added the new supplement slowly, knowing that I have a way of reacting poorly to new medications if I try to introduce them too quickly. By Friday, I started to increase the dose of the supplement as I was instructed to do. This is when the disease started to really show itself.
At first, my reaction was good, maybe too good. I had A LOT of energy. This was a good thing because I had to pack that night, and it was thrilling to think I might finally be able to get through one thing I had to do without it being a grueling task. Very quickly, though, the energy became too much. I visited the chiropractor who does my adjustments that morning, and I just couldn’t sit down in the waiting room. I just couldn’t stop talking either – not to the girls at the front desk, not to the doctor, not to anyone. I left the office, but had to return because I forgot to pick up a blood draw request from the other doctors I see at the same practice. After picking up the form, I went immediately to have the blood drawn. I was still in good shape.
After the blood draw, I got in my car to drive home. As I got on the highway, several things happened in quick succession. I was suddenly in tears despite a lack of provocation, and then I felt so fatigued that I thought I might have to pull over and nap so I could make it home (I only had maybe 10-15 minutes left of the trip). A moment later, my face started tingling along my right cheek and upper lip. This had happened to me before, during the first part of my health crash. But then, the right side of my face went slack, like I was having a stroke. The slackness went away quickly, but the numbness stayed until the following Tuesday.
I want to emphasize here that I DID NOT have a stroke. I looked up the signs of stroke after I got home, just in case, since there is a family history. In fact, I am providing a link here to information about how to recognize stroke, just as a bit of a public service.
While I knew what was happening was not a stroke, it became clear right then that the problem was indeed a neurological disorder. I’ve had more than one person suggest Bell’s Palsy to me, but from all the things I’ve read, it seems that Bell’s Palsy is limited to just the facial numbness and paralysis, and it’s a diagnosis of elimination. No, this is more. It affects my emotional stability and my fatigue level very profoundly at the same time. I plan to study the neurology textbook I invested in a while back, and of course, to bring this to the neurologist. I think that this will tell us at least where the infection is lurking.
I’ve said before that my illness is like an episode of House. We just have to provoke the illness to make it show itself, and only then can we treat it properly. At least, I hope there’s a treatment. Some attempts at provocation fail, and sometimes when we aren’t trying to do anything, we accidentally get a result.
While I am waiting for the elusive diagnosis, I can at least manage some of my symptoms now. The bad reaction I had was triggered by withdrawal from the supplement, not the addition of the supplement. That means, in the right dose, I can suppress a lot of the bad things that have been happening. I’ve noticed that on it’s own, the new supplement has no effect. At this point, I know I have to consume D-Ribose and caffeine at the same time to cause the energy increase and relief from inflammation. There is also another of my supplements, one that I only take twice a day, that enhances the effect of the new supplement. I’m going to have to experiment over the next few weeks to see exactly which one that is.
As tempting as it is, I am not going to get too excited over this development. The problem is that I’ve had things that helped before, but it didn’t take long for them to lose their effectiveness. Also, I’m just managing symptoms right now – maybe eventually there will be a cure, but depending on exactly what’s wrong, there may not be one. There are also undesirable side effects of the supplement – I can’t sleep well anymore. I wake up every hour at night. I’m trying to stop taking the supplement earlier in the day in order to avoid that effect, but when I’m not taking the supplement, the other symptoms return. I have to achieve a balance I can live with for now. At least it’s progress.