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Old 02-16-2012, 01:09 PM #1
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Default 6-month appt last week

Went to Kansas City to see my MS Specialist. 3-hour dirve down, an hour and a half wait because they were behind in schedule, a 15 minute appointment, and a 3-hour drive home.

Both Dr Lynch and I are pleased that it's been almost 2 years since my last hospitalization. I don't think that, until now, since my first MS flare in 2002, I've ever gone 2 years without a hospitalization.

I did have a couple of minor flares in spring/summer, but, they had minimal symptoms, were caught early, and were treated with a much lower dose of prednisone than I usually require (80mg/day, instead of 1000mg). At the time, Dr Lynch had been somewhat concerned (even though I wasn't) at the frequency.

I wasn't concerned because spring/summer was a high stress time for me. Most were actually "good" stresses (wedding planning, college-reunion planning). But, then there were some immigration gitches with my Canadian SIL that were pretty stressful. I've found that, as far as triggering MS flares, stress is stress. Doesn't matter whether it's good stress, negative emtotional stress, physical stress related to illness, dental issues, whatever. Stress, for me, often triggers flares. I'd actually been encouraged, rather than concerned. Because, in spite of the stresses, I avoided a major flare and I avoided a hospitalization. (Since last spring/summer, I've learned to intentionally reduce my stress level by feeling much more free to say "no" to even somewhat minor things that I determine might invoke stress.)

... So, anyways, since I'd now gone 6+ months with no additional flares, and with the 2-year no-hospitalization milestone, instead of talking about possibly needing to consider a different med, Dr Lynch was very encouraged with how well I'm currently responding to the Copaxone and has no desire to look at anything different.

Not sure what additional factors may also play into increased health. I've been experimenting with lower gluten for the past year and a half. Still not believing that I need to go 100% GF; I take a gluten digestive enzymes which gives me flexibility with my diet. Possibly some of the other dietary supplements that I've added to my daily regime (a variety of things, many with anti-inflammatory properties) have helped with my decreased MS problems as well.

I've also lost a lot of weight (60+ lbs) in the past year and a half. Have gone from a size 22 to a size 6 or 8. That's helped with my balance issues, but I'm not sure that it would make a difference regarding frequency and severity of flares.

~ Faith
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Symptoms since 01/2002; Dx with MS: 10/2003; Back in limbo, then re-dx w/ MS: 07/2008
Betaseron 11/2003-08/2008; Copaxone 09/2008-present
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Old 02-16-2012, 01:20 PM #2
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Congratulation on the good report from the Neuro and the weight loss! 60+ pounds is amazing! I hope you continue on this positive track. And good for you at learning to say "no". Sometimes that little word is so hard to say but so necessary for our health and sanity.
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Old 02-16-2012, 02:17 PM #3
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Good news Faith. If it ain't broke, don't fix it..
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Old 02-16-2012, 02:25 PM #4
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Quote:
Originally Posted by Kitty View Post
Congratulation on the good report from the Neuro and the weight loss! 60+ pounds is amazing! I hope you continue on this positive track. And good for you at learning to say "no". Sometimes that little word is so hard to say but so necessary for our health and sanity.
Thanks, Kitty. I think that my daughter (age 22, just married in May) is the hardest person for me to say no to. I've said "no", the past two years, to helping her anymore with her taxes. Last year it was easier to say no, but, this year, as a married Canadian resident/dual citizen, and not just an dual citizen student in Canada, taxes are more complicated for her. So, she pushed me quite a bit harder to help. I offered, if she can't figure it out, to pay an accountant this year, to do it for her, and then she'd have a tax strategy to copy in future years. Not sure, though, that she plans to take me up on my offer. It's easy to ask mom to do things, but, when mom gives her a somewhat different solution, she can maybe do it herself.

Also, when she was home at Christmas, and we were getting ready to go on an extended family vacation to Branson with my husband's family, she pushed me, when hubby and I planned an excursion to Silver Dollar City, to check with all the other family members to see if they wanted to come along (so that she could decide if she wanted to go -- she wanted to hang out with her cousins and wondered if they'd be hanging out in Branson or going to Silver Dollar City too). Although I had absolutely no problem with anyone coming along, I had not one ounce of desire to be the organizer for such a trip. I simply told her that, Dad and I were going, she and her brother were welcome to come along and we'd pay. But I let her know that she was welcome to follow up to see if others were interested if she wished to. That was simply not going to be my job. Again, it's easy for her to ask mom to do things. Things are less likely to happen if I give an alternate suggestion.

Anyways, those are two recent examples of times when I've "just said no".

~ Faith
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Betaseron 11/2003-08/2008; Copaxone 09/2008-present
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Old 02-16-2012, 03:40 PM #5
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Faith, great news on the MS front...wow! you lost a lot of weight...that's great too!

It is difficult to say no to the kids, I agree. I have trouble saying no to the daughter too. But now she lives out of state, so there isn't much for me to say no to...
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Last edited by Debbie D; 02-16-2012 at 03:41 PM. Reason: typo
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Old 02-16-2012, 05:12 PM #6
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Quote:
Originally Posted by Debbie D View Post
Faith, great news on the MS front...wow! you lost a lot of weight...that's great too!

It is difficult to say no to the kids, I agree. I have trouble saying no to the daughter too. But now she lives out of state, so there isn't much for me to say no to...
lol, Debbie. Glad the living outta state thing is working for you. Seems like my daughter asks more of me, sometimes. Can I get this mailed to your house, and you bring it along? Can I borrow this or that/it just sits in your basement/bring it next time you come. Help me with my (US) taxes, because I have to do Canadian ones too, and it's too confusing for me. Can you bring that Curley's BBQ sauce that I always liked so much. etc.

But, I love her dearly. Actually, we're going for a visit soon, to see her and her husband in Winnipeg.

~ Faith
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Symptoms since 01/2002; Dx with MS: 10/2003; Back in limbo, then re-dx w/ MS: 07/2008
Betaseron 11/2003-08/2008; Copaxone 09/2008-present
Began receiving SSDI 11/2008
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