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Old 03-20-2010, 05:34 PM   #1
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silver22 HB User
how do you manage your MS med-free?

Hi MSJayhawk -

I have read some posting answers that you give and I notice that your signature states "med free since" 1977, I think? My question is, how do you manage your MS med-free? I am working with a specialist now (MS, obviously) and he strongly recommends meds. My chiropractor (also my uncle) wants me to try and help my MS with diet, enzymes and supplements. He says my body can do what the meds do chemically within my body, once I eliminate all the "junk" from my diet. I am skeptical, but DO believe that diet has something to do with it. My MS specialist says diet does not have anything to do with MS. Conflicting info - very confusing.

So, basically I was wondering if that is how you manage med-free? Thanks in advance for your time. Anyone else can chime in too on this topic, if you would like.

Wishing you well.

silver

 
Old 03-20-2010, 08:28 PM   #2
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MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: how do you manage your MS med-free?

I have learned what triggers cause my MS to hit me. There are, however, times when my MS flares up which are beyond my control. If I can control some of the triggers, then I can avoid the triggers.

From 1977 to 1982 I did not know I had MS. When I was diagnosed in 1982, steroids were the "meds du jour". My neurologist told me not to take the steroids due to their short term use and the side effects. He told me to avoid stress, get my rest, and when the MS flared up, to take time off to heal. Later I added the Swank Diet.

My current neurologist has told me that med free really works for me. I listen to her words of advice, stretch and do my passive exercises, and lean daily on my Creator. Med free works for me.

As for your uncle's words, I would disagree. If his words were true, then I would be cured by now. My MS is progressive, but I do not let my MS rule my life.

I did not want to burden my family with medical expenses. I would rather invest in my legacy, my sons. I have also found that counting my daily blessings seems to keep my MS "locked in the broom closet". I may walk with a cane and drag my left leg, but it is not everyday. On those days when bed rest is required, I restart my goals and each day I raise the bar a little higher.

I think it is important to avoid falling into the trap of self-pity and self-blame. Many who are chronically ill will go to a pity-party and let it drag them down and/or they will burden themselves with guilt for having the disease. There are, in this world, diseases and problems which affect people regardless of socioeconomic levels- MS is one of them.

Taking the focus off of self and lending a hand to our fellow brothers and sisters really makes a difference. Yes, there will be bad days ahead, but there are good days too. My struggle is daily, but daily I receive many blessings too.

My mom is a big proponent of the supplements, enzymes, etc. but few are worth the money if eliminating MS is the goal. There are supplements you can take for every day good health, but if you are going to take supplements to "cure" your MS, you will only be enriching those to whom you pay the money.

Most doctors will certainly recommend meds because they are taught that in school. My first neurologist was originally from Taiwan. He went to a different medical school in addition to the US med school. His perspective was a bit different. My current neurologist worked under him and she recommends meds, but she does not "push" meds. She has shared my methods for combating nerve pain in my legs with her other MSers for whom meds did not help.

Meds have no effect when MS is progressive. Pharmaceutical research is geared more towards the bigger numbers. Because progressive MS is not a priority, little has been done. If meds were available for progressive MS? I still would not take them dues to untested long term effects. I am happy with my life.

Someday there will be a cure- a real cure. When that day comes, if I am still alive, I will take that med.

I encourage you to decide what is best for your life. Make your decision based on what is best for you. Know that whatever med you take has long term side effects, many of which will not be known. Recent studies have shown an increase in brittle bones for MS meds, not just steroids. If you go the med route, it is imperative to stay atop the bone loss.

Since MS finally disabled me permanently in 2002, I started my second career to home school my sons. Nowadays I commute daily to campus with my service dog and chaperon my 11 year old to his calculus, biology, and chemistry......classes. The cognitive workouts also help me in my daily battle with MS.

What will tomorrow bring? I never know until the morning I awake. Remember, there will be good days and bad days. If you know your triggers, you can avoid them and take control. When the MS hits without a trigger.....take a break, delegate your work, BUT never beat yourself up. Life with MS can be filled with blessings!!!
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

Last edited by MSJayhawk; 03-20-2010 at 08:31 PM. Reason: typo

 
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Old 03-21-2010, 04:47 AM   #3
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silver22 HB User
Re: how do you manage your MS med-free?

Wow. Your story is incredible. Thank you for sharing. I will be doing a lot of research, and will hopefully make the best decision that is right for me. I love your outlook on life and this disease. Be well.

silver

 
Old 03-21-2010, 10:32 AM   #4
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Re: how do you manage your MS med-free?

I should have added one more strategy. I "bank" my energy. That is, before an event/outing, I start banking or saving my energy. Events, whether a party or a family gathering, can sap your energy. Rest before and rest after and I think it helps. In between, you have to find your "runner's pace". If you push yourself pace your pace, you will likely fall flat on your face. It is one of many triggers I try to avoid.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
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