Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
the problem with any treatment choice we make is because of the characteristics of m.s. and the remissions how do we know if it was our treatment or a remission.i know someone with m.s. who has practically no symptoms and treats herself with diet alone and has never gotten worse.how do we know she would never have gotten worse without the diet change???. i know someone who 6 years ago was pretty bad and has been on avonex for over 5 years and is doing great, how do we know if he wouldn't be doing great without the interfearon???.i also know someone who was in a wheel chair and legally blind for 6 months 3 years ago and completely pulled out of it and was only doing diet change and physical therapy,she was fine for 2 years and then started to go downhill again while still following the same natural treatment program.now she's now trying copaxone.
i am on copaxone for the last couple of months i'm feeling better but i know that it has cooled down and i always feel better when it's cooler, and i know that it is supposed to take 6 to 9 months before you start to feel a difference with copaxone.when i started copaxone i did so knowing that there is a chance that i could have a long term or even lifelong remission of some symptoms even without the copaxone and that i could never say with certainty that it was the copaxone that did it.if i do feel better within 9 months i will continue the copaxone on the chance it was it that made the difference.but i will know that i could still go down hill again if it wasn't.
i'm writing this just to put the discussion out there.NOT in disagreeing response to anyones treatment plans that have been posted.
as i said in the subject it has to be a personal choice.
i am on copaxone for the last couple of months i'm feeling better but i know that it has cooled down and i always feel better when it's cooler, and i know that it is supposed to take 6 to 9 months before you start to feel a difference with copaxone.when i started copaxone i did so knowing that there is a chance that i could have a long term or even lifelong remission of some symptoms even without the copaxone and that i could never say with certainty that it was the copaxone that did it.if i do feel better within 9 months i will continue the copaxone on the chance it was it that made the difference.but i will know that i could still go down hill again if it wasn't.
i'm writing this just to put the discussion out there.NOT in disagreeing response to anyones treatment plans that have been posted.
as i said in the subject it has to be a personal choice.
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I have been here before, a long long time ago and now I am back.Forgive me for not just saying what I want to say,even under a triple dose of antidepressants it is still raw and seeping and I am hesitant at revealing it as at least under the bandages around my heart I don,t have to look at how raw and wounded.My child was cleaved from my heart by his own actions. my child of ten,turning eleven...
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theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??
I had attacks in the 70s, 1981 was my WORST, 1986 was bad, 1988 was livable, and THEN 1991, 1992, 1993, 1994, 1996, 1997, 1998, 1999, 2000, 2001, 2002. The one in 2002 left me for DEAD. By March 2003 I was flaring up again, I couldn't leave my house due to my bladder, I was losing hope, I was ready to DIE.
4/17/2003 I started LDN, within 11 days I was alive again( documented and journaled in my story thread, http://www.larrygc.com/mystory )
AFTER 11 years with 10 Major full blown attacks, 1991-2002, I haven't so much as even had a COLD. My allergy tests from 2/2003 were just duplicated 9/2007 and I have NO Food allergies (it's in my journal here on DS)
I also have an exceptional Killer Staph infection story from 10/2004 that a 23 yr practicing podiatrist said he'd never seen before. That's also in mystory thread.
So, I can only go by my medical history. The only thing I'd change would be starting LDN in 1992 or 1982, but since I couldn't possibly find out about it before I did, hopefully it's all I'll ever need even if I have to take it every day for the rest of my life, like a diabetic takes insulin.
i know that having m.s. does not mean that you WILL get worse as you grow older.i have another family member in her 70s who hasn't gotten any worse in 20 years.
that's why i'm saying how do we know if it is any treatment we are on making us better or if it's just that we were very lucky to have a remission???
i want to say again that i didn't write this to disagree with any treatment
I've looked at the studies and it shows that Rebif seemed to help the most people over a certain time frame - so I choose that. Did I make the right choice? I have NO clue! I know for myself and my boyfriend, we both feel like we are doing something to try to stay sane by sticking a needle in me every 3 days. he's paranoid if I stop. I have told him I wanted to not take the shots anymore, etc.. and that scares him. I go for my third MRI this month. February's showed one newly active & small, and one normal active. March's showed the normal active still active, the newly active twice the size and active and then a third new one that was small. I'm curious what the next one will bring.
you will find many posts about people confused - how do I know if it's a relapse, or if this is a flare, or should I call my neuro, etc.
Each person needs to do what they feel is best for thier body. If you think about it, if 40 of us went to the gym - most of us would need different routines - based on our height, weight, physical needs & strength. So, if we can't even exercise the same with same results, why would we be able to treat an incurable disease and have everyone with same results?
It's all just guesswork, and what makes us feel the best.
Hugz!