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My Intro..

PostPosted: Fri Jan 28, 2005 4:20 am
by PhireX
Hey. 21 year old aussie male, diagnosed with MS. This is probably my worst nightmare come true. I could probably deal with cancer better but living my life in pain and paralysis seemed worse.

Then I realised that the internet was such a wonderful resource for information and there is great hope, although not "Clinically" proven I am on my search for LDN currently and am going to start Copaxone, might eventually dump that.

So here's my quick story. I've had "MS" since I was 17 according to the Neuro who saw my MRI's, im not happy with him btw, in process of finding a better one, but I believe according to a well known doctor in my country (australia) we dont have any good ones here in my state, considering flying interstate to see one who knows their stuff. Dont know if that's actually gunna reduce my lesions though, so kinda tossing up whether or not there's any point.

Neuro rejected my "application" for LDN. Saw a GP today who is looking into it with the pharmacy, etc who makes it and I find out in 4 days. I hope it all goes well. If I lived in the US, I'd just fly to new york and see Bihari or someone who is a known prescriber, unfortnuately I dont have that luxury.

Oh yeah I had a shocking time on Rebif. One book I read on IFN said "Side effects are more common in younger patients & patients with a lower body mass" - I'm 5"10 & 137, BMI = 19.7. So I'm skinny. Lost my job over it, but I see it as a blessing in disguise, beacuse it's given me time to properly research this disease and find out about things like LDN etc.

Anyway I've said enough. Thought Id just chime in and say hi and hope to see some other youngin's around. It's a shame we have to deal with this so early in life, before we start a family (Some may have already) bought a house, etc, the only thing I'm thankful for is I have good private health insurance.

Catch ya's round. Ash!

PostPosted: Fri Jan 28, 2005 10:17 am
by Arron
hey there, welcome to the site!

PostPosted: Fri Jan 28, 2005 12:45 pm
by CCmom
Hi, Ash. Didn't realize you were in the younger category when we were messaging back and forth! Welcome to the site. I can't wait to hear what your GP says. Did you get my message about posting your questions on the large yahoo group regarding LDN in Australia? I know we have several members on there from Australia, and they are very helpful people. You might also enjoy reading some of the posts. Here's the link again, in case you missed it on the other thread!

Good luck and keep us posted.


PostPosted: Fri Jan 28, 2005 6:44 pm
by PhireX
Yes & Thanks for that. I'm actually already a member, I've been reading & reading & reading, I feel like an internet book worm. :)

Times like these I'm glad I know a thing or two about computers, or I'd probably never venture onto the 'net, and basically not believe that there was "nothing" I could do about my MS other than shoot up every day, I feel like a flippin heroin addict or something. :) (Especially going onto Naltrexone, lol!)

PS: this board is so supportive, and thanks CCMom, you dont even have MS (I dont think) and you're very willing to help others out, so that's great! Hope your Son does okay he got hit pretty early with this danged disease.....

PostPosted: Sat Jan 29, 2005 6:45 am
by CCmom
No, Ash. You are right, I don't have MS. But since my son got this diagnosis, I made it my mission in life to learn everything I could about this, and if I have information that might be valuable to other people, I chime right in.

The net is great. I am like you, I don't know what I would have done had I not been computer literate! I've learned alot here and made alot of friends along the way. And I've found that the more I've learned, the less afraid I am. And the less afraid I am, the less afraid my son is, so it's a win-win situation.

Take care of yourself, and again, welcome!