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New with questions!

Posted: Sat Jan 26, 2008 7:54 pm
by charlie_
Hi

The situation is that last March I was diagnosed as having CIS, one attack, one lesion at C4-C5, brain scan totally clear and a positive lumber puncture. No 'official' dx, just a 50 50 chance. My mum also has RR MS.

10 months on, I had another MRI 2 weeks ago, brain scan now has 8 lesions, neuro wants me on DMD's.

Obviously it isnt much of a surpise, but at the same time it is. I was fully expecting my brain scan to come back clear again. Even though MS was being looked at, I never really thought I would actually be diagnosed, and im not too sure how I feel about it all really. I haven't had any major attacks, apart from the one last year, just little niggles I guess. DMD's, hmmm I dunno, will I stay like this without them, or will I get worse anyway on them, who knows!!

I'm not sure what was better, probable MS and the limboland, or a dx of MS and the debate of DMD's. I must admit, I really am struggling with the new results. I just wasn't expecting it and I have no idea what I am going to do.

Obviously I don't want to become more disabled, but I can handle the way I am now, but will I stay this way without DMD's, will I get worse without? or would I get worse even on the DMD's. Looking at the DMD's there does appear to be only one which would suit me anyway. I have Bipolar, so all the others have 'mood swings and depression' as a side effect, not really what I need when I am already trying to control my Bipolar with Lithium. So Copaxone seems the only option, along with it's daily injections and what sounds like lovely skin reactions.

I'm not asking for anyone to tell me what to do, just thinking aloud on a forum I guess.

After having a clear brain MRI 10 months ago, is 8 new lesions alot? Does it mean anything?

Sorry for the ramblings

Charlie

Posted: Sat Jan 26, 2008 8:31 pm
by gwa
There seems to be little to no correlation between number of lesions and symptoms.

gwa

Posted: Sat Jan 26, 2008 11:50 pm
by RuSmolikova

Posted: Mon Jan 28, 2008 9:36 am
by Grumpster
Hello Charlie,

Sorry to hear about your situation. Your post mimics my thoughts when I was dx six years ago. I recommend that you start a DMD just because the statistical numbers show it helps. How much? Who knows. I am on Rebif and it sux, but who knows how I would be if I never started on it.

From zero to 8 lesions in a short period would be enough for me to start. True the correlation between lesions and symptoms and disability is not clear, or linear but the new lesions do tell me that the MS is active and I would try to slow it if I were you.

Good luck and stay strong. The initial dx is tough, but at least you know where you stand now, not that it is too comforting. This is a great place to discuss it all so keep posting.

G

Re: New with questions!

Posted: Sat Feb 02, 2008 4:41 am
by seeva
charlie_ wrote:Hi

The situation is that last March I was diagnosed as having CIS, one attack, one lesion at C4-C5, brain scan totally clear and a positive lumber puncture. No 'official' dx, just a 50 50 chance. My mum also has RR MS.

10 months on, I had another MRI 2 weeks ago, brain scan now has 8 lesions, neuro wants me on DMD's.

Obviously it isnt much of a surpise, but at the same time it is. I was fully expecting my brain scan to come back clear again. Even though MS was being looked at, I never really thought I would actually be diagnosed, and im not too sure how I feel about it all really. I haven't had any major attacks, apart from the one last year, just little niggles I guess. DMD's, hmmm I dunno, will I stay like this without them, or will I get worse anyway on them, who knows!!

I'm not sure what was better, probable MS and the limboland, or a dx of MS and the debate of DMD's. I must admit, I really am struggling with the new results. I just wasn't expecting it and I have no idea what I am going to do.

Obviously I don't want to become more disabled, but I can handle the way I am now, but will I stay this way without DMD's, will I get worse without? or would I get worse even on the DMD's. Looking at the DMD's there does appear to be only one which would suit me anyway. I have Bipolar, so all the others have 'mood swings and depression' as a side effect, not really what I need when I am already trying to control my Bipolar with Lithium. So Copaxone seems the only option, along with it's daily injections and what sounds like lovely skin reactions.

I'm not asking for anyone to tell me what to do, just thinking aloud on a forum I guess.

After having a clear brain MRI 10 months ago, is 8 new lesions alot? Does it mean anything?

Sorry for the ramblings

Charlie
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Caution with alternatives

Posted: Sat Feb 02, 2008 5:57 am
by lyndacarol
Dear seeva, I was reluctant to post a response, but can't help giving you this caution. With MS we are desperate for help and this makes us easy targets for schemes from unscrupulous people who us as a way to make money.

People can claim anything, but we should ask for proof! We must be skeptical and cautious--some of these "cures" could cause us even more damage and problems; we must balance the possible risks and benefits.

Posted: Sat Feb 02, 2008 7:15 am
by gwa
The contents shown for the sea mineral are pretty worthless. You would be better off just buying some sea salt at a fraction of the cost and using it on your food.

Sea salt has a lot of minerals in it, much more so than the product listed on the link that you posted.

You probably have a better chance of being abducted by space aliens than benefiting from this product.

gwa

Posted: Sat Feb 02, 2008 7:36 am
by SarahLonglands
Seeva, you quoted above:
ACCORDING THIS PRODUCT CHLORINE DIOXIDE ION IS THE MOST POWERFUL KILLER OF DISEASE THAT HAS EVER BEEN KNOWN.
Its not only disease that it can kill:

http://www.npi.gov.au/database/substanc ... es/21.html

MS is a horrible thing to have but there are many better treatments than this.

Sarah