one bad news after another - a few more questions

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one bad news after another - a few more questions

Postby melko321 » Wed Nov 13, 2013 4:17 am

Hi everyone,

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.
melko321
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Re: one bad news after another - a few more questions

Postby want2bike » Wed Nov 13, 2013 7:27 am

Best to stop worrying about how many lesions you have and concentrate on healing. Actually you are lucky not to be doing the MS drugs because they are not good for your health and of no benefit. Let Dr. Bergman explain what you can do to get your health back.

http://www.youtube.com/watch?v=GJyQTTZr ... _embedded#!

http://www.youtube.com/watch?v=zGmyUppmt-g
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Re: one bad news after another - a few more questions

Postby MarkLavelle » Wed Nov 13, 2013 5:07 pm

melko321 wrote: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.

You've probably already heard that people use only a small fraction of their brain cells. You're just experiencing a benefit of that fact: even with lots of damaged cells your brain can still function normally.

That's not true for the spine (just one cell for each job there), but the exact location & extent of damage can vary quite a bit. It's possible to have spinal lesions that do not appear to cause any symptoms, and others will only cause sx if your body temp is raised.

I'm a big fan of the judicious application of denial, but to me it really does sound like you've got MS...

RRMS dx 3/3/11; Copaxone since 12/1/11
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Re: one bad news after another - a few more questions

Postby melko321 » Wed Nov 13, 2013 11:41 pm

Thank you both,

want2bike - I have already taken some steps like changing my diet , resting more and swimming three times a week to try to keep this demon away for as long as I can. I'll try to take up some more advice from Bergman and others. With that said, I still wouldn't refuse interferon if they offered, I know the effects are probably weak but it would make me feel like I'm doing something more to combat this illness. While I believe that a lifestyle change can make a considerable dent in the course of an illness, I am skeptic towards such claims as "I changed my diet and cured cancer." MS is especially fit for these kinds of claims because of its relapsing-remitting course, anyone from BigPharma to TV-healers can claim that it is their drug/method/whatever that worked.

MarkLavelle - thanks for clearing it up for me. I agree that denial is a wonderful thing, but this time I was actually more scared that it is something WORSE than MS, developing so quickly. So these few "subtle lesions" on my spine should worry me more than that army of lesions on the brain, who knew...
melko321
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Re: one bad news after another - a few more questions

Postby want2bike » Thu Nov 14, 2013 1:22 pm

There are many cures for cancer but none of them involve the drugs. the FDA will not allow these cures because it is bad for their drug business. Here are a couple videos explaining the history of our medical system. The key to prevention and healing all chronic disease is an alkaline PH in the body. This is done by eating fruits and vegetables which alkalize the body.

http://www.youtube.com/watch?v=gWLrfNJICeM

http://www.youtube.com/watch?v=AnN3Y8yvdkg
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