So I guess there is some confusion, or might be, as to the real outcome of my dr visit. So this is to tell the truth, the whole truth, and nothing but the truth. Or something like that. As Shane has pointed out, separating fact from fiction is not my stong point, and somtimes I do feel that a little creative history is more exciting. But I'll give it a try. As a disclaimer, I still have not yet received my formal debreifing in the mail so there may be some details left out. But I think I got the main points right.
So Yes- there was a new lesion in my cerebral cortex which corresponds to the muscle in my throat. I don't know the dimensions. Other than that, there was nothing noteworthy. None of the old lesions had "gone dark" or turned into black holes. Which brings up an interesting point. Generally, demyelination shows up on the MRI as discoloured spots. The lesions sometimes do heal themselves and a grey spot can disappear after ahile. When the damage is so severe that it has damaged the axon, which is what the myelin is covering, it turns into a black hole. Meaning all the myelin is gone, the axon is damaged beyond repair and there is not much you can do. Well, I had one of those a couple years ago, and in subsequent MRIs it seems to be MIA. Which is fine with me. I asked Dr M about that and he said that sometimes spots can show up that look like black holes. But they are not. If it never goes away, it is a true black hole. If it does go away, it was an impostor. Apparently the only way to know is just to keep watching it.
Yes, Dr Prineas is real. His work is real. And he is a respected pathologist who has brought some interesting thing to light. As far as "is this really autoimmune" goes, Dr M explained that there are two schools of thought on how damage occurs. One is "outside in" meaning the body attacks the myelin from the outside until it damages the axon. The othere is "inside out" meaning the problem starts in the axon, or the myelin itself, and somehow causes the myelin to fall apart, or whatever it does. Another theory is that there are different kinds of MS, all of which lead to myelin loss and bad nerve conduction. Which may make sense in that some people respond well to different drugs and some people don't respond to any.
As for me, given that the Rebif I was on did not halt things completely, Dr M said I can skip all of the interferons. Which I am happy about and had already given up about 6 weeks ago anyway. So no more chinese hamster ovary cell based injectibles for me.
But then he tried to sell me on Tysabri, which involves mice DNA. Can we please just cut out the animal parade? Of course that one also has the risk of a fatal brain infection and as it has not been around that long, there are no long term studies that tell you 20 yrs from now you may sprout a tail and take a great liking to cheese. So I took the brightly colored information pack home and have it sitting up next to my bed. I have not been in need of any late night reading though, so have yet to discover how wonderful the drug is for my brain, in the event it does not invite some voracious guest in to eat it first. Needless to say I"m not sold on it.
So finding that Dr M did know of Dr Prineas and thought his work was real and important was just the first pleasant surprise. I told him I would think about the Tysabri. But in the mean time, could I try LDN. And he said yes. I was really surprised. It seems many neurologists will not prescribe it and consider it a sugar pill with an anecdotal placebo effect. I like sugar, so why not give it a go?
LDN, or Low Dose Naltrexone, is a very small dose, around 4.5 mg, of Naltrexone, a drug initially formulated and marketed for meth and alcohol addicts. In that dose, 50 mg, it works by inhibiting the opiod receptors. IN other words, you won't get the "high" you were looking for. In the very small dose taken at the right time, it temporarily blocks the receptors and causes your body to increase its endorphin production. I can see how that might attribute to a placebo like effect, however in a small study of Primary Progressive MS, all but one patient stopped declining for the duration of the study. It was short and small and no one has done a larger study or compared MRIs or followed people on it for 20 yrs. Dr M said himself there probably never will be. It is really cheap- $40 a month compared to $1700 a month for injectibles- and there is no big company to fund an expensive study. There is no profit for anyone to be had and to front all that money, just to make your drug look bad would be ludricous. ( There have been stories of tumors being shrunk and I think someone grew a leg back. Just kidding. About the leg. The tumor part was true.)
Well I am quite happy to do my own study. I'll be getting the pills this week, but I think I might wait until after our week end trip to Canada to start it. As far as side effects, some people say they have very vivid dreams. Not bad or anything. Just very clear. Some people find it makes their legs stiff. Others say the opposite for them. It does not hurt your liver. Pregnant and lactating women have taken it with no ill effects- although if it were me, I'd stop it anyway. No injection reactions, brain infections, flu like symptoms, and all that rot.
So, I'm tyring not get too excited. But really the thought of no more shots or interferons really is exciting. Dr M says he'll have me check back in 3 months and see how its going. And I can even get a Tully's coffee next time. I'm looking forward to it.
The only disappointment, and it wasn't really a surprise, was when he told me there was nothing I could do about all the scar tissue and skin hardening on my legs. Shane tried to tell me it was not so bad. Then he broke into the Madonna song "Like A Sturgeon". Which was really uplifting. These are my thighs. They are not supposed to look like fish. I guess I can't be too picky. They are very serviceable right now. And they do make knee length bathing suits if I get too self conscious. Guess I'll just have to play up my earrings more. Shane would be happy to get me some.
Thus ends my three part sojourn into the land of my brain. Its kind of a scary place, even without black holes. But I thought it best to clear up any misleading or confusing information. And some down right lies. Far as I know this is all accurate. I'll check it against the radiologist's report and post any errors. Othersise, it's onward and upward in the land of raising and educating children.
On that note, the educating one I think, I'll tell you what PUTBOOM is next post. Any guesses?
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