My Adventures in MS

Tell us what you are using to treat your MS-- and how you are doing.

Postby mrhodes40 » Wed Nov 16, 2005 4:44 pm

Rica said "You are taking your life in your hands!" DUH. "
Oh jolly good thing you did too!! No one else was going to do it now were they? :?

Forgive me if I rant? The copaxone people released a 25 or so year study on people with copaxone. about 28 people are apparently doing well with cop. But they lost half of the people, the other 28 dropped out of the study over the years apparently they thought it was not good or not working for them. IF we told someone that we had done an abx trial and half of the participants dropped out due to side effects or perceived lack of efficacy, do you think we'd be a laughing stock? You bet we would! We'd be scoffed right out of the halls of science. This cop study is not even credible, yet, Rica, should you have told your neuro you wanted this stuff he'd have complimented your intelligence for choosing one of the "proven" meds. What he really means is that he'd compliment you on choosing one of the MARKETED drugs that he keeps seeing in front of his face in the journal ads. Whether he knows it or not this is why he believes in it. Anyone intellectually honest is going to scoff at that kind of study being touted as "science". Yet we are "taking our lives in our hands" because we do this??? Good grief, sounds to me like it's the other way around. Ok let me be honest here: I take cop. Been on it for 8 years or so. If I go off my arthritis gets bad within 5 days. but it did not stop MS progression for me, though to be honest I am not sure I would not be worse without it. Who can know??

Rica said"and I have walked 45 minutes shopping (ugh) and still not been tired. " HAHA! I also hate to shop, but God help me I like to give everyone a thoughtful Christmas present. Used to be all year I'd keep a close eye out for that special something and just pick it up. This year I'm so preoccupied with not falling down I can hardly see the floor 5 feet in front of my feet. So, this year it's gift cards and cash and I am very sad about it. I feel I've lost something important about me. But it sounds like next year will be better. Good deal

The Stork Test!! Good one!
Stork test good leg=9 seconds
bad leg (right)=2 ( well OK maybe not quite 2 but more than one- one-thousand, two-one- oops! Rats. Ok here I go one- one thousand two-oops! Crud. Ok, this time....one-one thousand two...oops!)

And a new one from me the hop test, allowed to hang on with hand for balance (neuro's use this one)
left, good leg= can hop on this one foot 8 times, not high but I do leave the ground: a little hop
right leg= HA! are you kidding? That foot ain't leavin' the ground no how no way. It can't even go up on the toe, though I can raise the heel about 2 inches once or twice.
KK2 I get a 5 on the franken scale-enough to get people to say "did you hurt your knee? but not enough to get them to stand near "just in case" that'd be an 8 or 9 to me.

I love this new scale we are creating! We can all measure this way Great plan! Measurable posts! Fabulous! Newbies can do it for themselves before starting, eh? S-M-A-R-T yeah Rica!

Blessings
Marie
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My Adventures in MS

Postby Katman » Mon Dec 05, 2005 7:20 am

Going under for the 15th time. I am not as foggy so far but I think I will get that way in the next few days. I started this Flagyl pulse one week early because I could, just as last week I could walk half a mile. By that I mean that my body said it had recovered enough to do battle against, Enough R and R- raose the colors and march!

Last Friday we got a new elliptical machine with whole body participation. It is wonderful! The one we have had for four years was lower body only, purchased before dx, when I could still throw bales of hay and bags of feed around. Dumb not to think ahead, but I think my mind was affected even then but I didn't know it. Anyway, the company left out the assembly book of instructions - "owners manual". Being of clear mind and sound body, I put it together! My husband asked how I knew which part went where and I answered "logic". It is GREAT! I really don't think I could have done that the last few years. It helps that the thing is German and designed and made with great precision.

Does anyone remember Patricia English? I hope I have her name right. She was brutally beaten in Central Park 12 or 16 years ago and had very bad brain damage. I heard an interview with or quote from her today. She is improving EVERY DAY.
My hope for all of us is to be able to say as I can "I am improving every day" (with occasional slow days!)

Rica
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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My Adventures in MS

Postby Katman » Wed Dec 28, 2005 8:29 am

Edss 6.7 UP to 2.5 was the pronouncement on my (probably last) visit to my neurologist yesterday. I am PPMS and have had one attack which lasted 10 years. My last Avonex was 2 weeks ago and I don't plan to take ANY Avonex,Betaseron, Rebif, Copaxone, Tysabrie or any other interferon or any new meds "they" may come up with for treating the symptoms of this horror. The several shots before the last had had no discernible impact.That IS, of course. what ALL treatments are for MS that are in the general arena. But for 15 months I have been doing battle with what seems to be the underlying infection of my 10 year downward slide into oblivion. I will continue with the regimen listed under my previous posts here and on www.CPn Help.org and David Wheldon.co.uk/mstreatment until ........ We all welcome any brave souls who care to join us.

Rica
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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Postby Anecdote » Wed Dec 28, 2005 11:41 am

"MS lesions NEVER go away." Oh, really, perhaps your neuro would like to see my scans, if he wants to "see for himself!" I'll admit most of my lesions haven't gone completely away, some in the periventricular region are here for keeps, but most have shrunk and some in the outer regions definitely have. "I can't see that happening" said "mine" to the radiologist, so yes, your experience sounds totally familiar, except he didn't say "If you need me, call." I was about 7 and am now, like you, about 2.5, maybe 2 or less on a good day! I think people like you and me are just inconveniences to most neurologists: they don't want their precious little theories punctured.

Sarah :)
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Shrinking EDSS

Postby Katman » Wed Dec 28, 2005 1:00 pm

But you have been at this 4 to 6 months longer, so maybe I, too, will improve even more. That was, after all, at 3;30 after rising at 6 am and running around all day. In any event, according to most (all?), this simply does not happen The best of all? The top would have to be energy for the whole day instead of an hour, then walking, then NO AVONEX!

Rica
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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Postby Anecdote » Wed Dec 28, 2005 1:17 pm

Rica, I am sure you will carry on improving and I hope I do as well. If you had been running round since 6.00 your EDSS would probably have barely registered if your appointment had been the first of the morning. These things aren't supposed to happen to either of us, but especially you with PPMS!

Sarah :)
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby Melody » Wed Dec 28, 2005 1:30 pm

John's energy level is consistent most days. I do note a dramatic change for John when he doesn't stick to his particular regime(Diet and supplements). Maybe we all just need to stick to our game plans. How long is enough to put into a regime? I don't know the answer to that. What I do know is if it's working for you right now then stick with it. An opinion not law.
John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.
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My Adventures in MS

Postby Katman » Mon Jan 16, 2006 11:56 am

This is an unplanned update but I am so excited I had to do it! It has been 2 weeks since my 17th pulse of Flagyl and 16 months on abx. For a period of time after that assault on my body I question (though much less than in the past) whether I really want to spend time doing this. My answer has always been yes. Then I enter my week of reprieve - the third week, the one before the next and 18th assault - and I understand why I do this. I went out and RAN just now and a year ago could barely walk with a cane.! A mean and normal person would say "You call that running?". Yes, I do. It was just like my kids when they were little toddlers. So I have to learn again. OK, I can do that.

Rica
Last edited by Katman on Mon Jan 16, 2006 3:44 pm, edited 1 time in total.
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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Postby natgas » Mon Jan 16, 2006 12:14 pm

Rica

That's wonderful!! Sounds like the ABX is working. Keep the faith and the posts coming.

Roy
The hurrier I go the behinder I get....
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Postby MacKintosh » Mon Jan 16, 2006 3:40 pm

Rica, That is just the BEST news! And I think you're right; it's just a matter of relearning, like getting back on a bicycle when you've been away from one for awhile. You can do it; you just need the reinforcement of practice. I really NEEDED to hear good news today and you have provided it. My thanks.
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
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Postby Jaded » Mon Jan 16, 2006 3:59 pm

Fab news Rica!

It's all coming together - everyone seems to be reporting good progress.

When I get there I will be over the moon too! Your progress gives us all hope.


Please continue to keep us all updated.

J.
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