I wasn't sure where to post this since I've already made my introduction in March of this year, but I guess I'm in the right place. Again I'm 25, male, and more and more depressed by every new check-up.
I'm really starting to doubt my MS diagnosis after my second MRI from a week ago, even though MS was officially confirmed. I doubt it for two reasons, and that is where I need your opinions. Reason number one is the number of lesions they found on my brain, which they didn't even bother to count, they just wrote "very many lesions" (so many that to simply write "many lesions" obviously seemed like an understatement). Those lesions have not changed since the last MRI (March) and the contrast did not show any active ones (small comfort that is). This is also my first MRI of the spinal cord, and it also showed discrete lesions (also non-active). My neuro says this is normal, but I'm not sure. I was hoping at leaast my spine is clear, but no such luck. So my question is - why do I feel ok? Like I said in a previous post, apart from slight libido issues I am walking,talking and thinking clearly, working and all. I know that the number of lesions does not necessarily correspond with disability, but you would think that an obviously half-dead brain would cause some more obvious symptoms. Also, do you happen to know if there is a way to find out if such a large number of lesions means that I've had MS for a long time or if it is simply an aggresive form of MS? I've noticed my first symptoms about 2-3 yrs ago, I doubt that it is enough time for "regular" MS (if there is such a thing) to cause so many lesions.
My second reason for doubt is this - the MRIs (both the 1st and 2nd one), apart from lesions, also showed a 5mm cyst on my pineal gland. This cyst did not grow since March,it is not tumor-like, it stays at its 5 mm and the doctors assure me that it is both non-threatening and not connected with whatever is going on with my brain. I've read something about the possible connection about the pineal gland and MS, but the websides were mostly "shady" so I wanted to chech with you. Ever heard of it? Anybody else with such a cyst?
As for therapy, I'm still on good old vitamin D, not because I'm refusing better therapy (I'll take anything, even Tysabri with a positive JC virus for all I care) but because my country is too poor for it. The criteria for inteferon here is two relapses within a year or two, both treated with corticosteroids, which I'm sure you know is ridiculous. By the time we get it approved, the therapy is long past its effectiveness deadline.
I still didn't get to ask about a Lyme test, and my neuro didn't mention it in the 3 minutes he had for me (not that it is his fault, the country is going bananas, too many patients, too few MDs)
As always, thank you for reading, extra thanks responders. And thank you all for this page as well.