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Old 10-12-2011, 05:12 PM   #1
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Question about progression...

Hello. I hope everyone is well. I am reading a book about MS and it provides that 90% of people with RRMS will progress to SPMS within 20 years, even more at 25 years.

The book was written about 5 years ago. So my question is, does anyone know if those statistics are still accurate? I would think that those numbers would decrease with all of the DMD's and other treatments out there. If not, what's the point of taking anything? To stay healthier in the early years? When you may very well have minimal symptoms then anyway?

I think '93 (?) was the year that the first DMD came out and i'm sure there are many more people on them and other treatments now than in the 90's. So i don't even know that enough time has passed to re-evaluate these statistics.

I would love to hear some thoughts and opinions on this. I don't mean to be such a pessimist. Thanks and have a great night!

 
Old 10-12-2011, 05:24 PM   #2
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Re: Question about progression...

The problem with statistics is that there are always variables. In the past 5 years the accuracy of tests have increased leading to greater numbers being diagnosed. Based on the increasing numbers, the veracity of the statistics is questionable. Also, MS affects each of us differently and the progression is also variable.

I believe that MS is a progressive disease in that none of us gets better. This will be the case until a cure is found.

I would let the book gather dust and enjoy each day of the life God has given you. If the book gives you worries, toss it aside and read something you really enjoy reading! Over here in Progressive Land life is still sweet and God is still blessing each day and every moment.
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Old 10-12-2011, 06:25 PM   #3
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Re: Question about progression...

Thank you, Jayhawk. I read the entire stupid book which was probably the worst thing i could have done. All throughout the book it just kept reiterating that you need to plan for the worst - literally in every chapter. So what - if and when i have to stop working or anything i can smoothly move into that phase of my life. Sure, planning makes that transition so easy right? I felt like it was basically saying do what you can now(taking a DMD), but progression is inevitable anyway.
I keep telling myself that i have to learn to accept this and enjoy my life, but i'm just not there yet. It's only been 5 mos since i was dx...
Thank you once again for your thoughts.

 
Old 10-12-2011, 06:45 PM   #4
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Re: Question about progression...

I think that it is always important to have a plan. I look back at Coach Tom Landry. He always had a plan. If it was 4th down and 1 yard to go, he had a plan for the situation if it was on their 35 yard line or a different plan if it was raining and they were on the 45 yard line.

I think that you should always have plans. Have plans that you make without emotions attached. Do it when you are feeling good and base everything on facts. When you find yourself in a bad way, open your plan and see what to do. If you did not have a plan for the situation, wait and when you are feeling better, add to your plan.

I think that when you have a plan, it can serve as an anchor to help you make decisions, especially when your cognition may be impaired. You can think of it as "If A, then do B" type of process.

You can also develop your "trigger list". If you have triggers which you know affect you, then you can work on avoiding those triggers. This provides you with a sense of empowerment.

Plan for tomorrow's troubles, but enjoy today's blessings.
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Old 10-13-2011, 03:23 AM   #5
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Re: Question about progression...

KingBaxter-
I have read every article, medical journal and book on the subject myself. Especially recently, with my new switch in meds, Ive been eating statistics as well. (Funny cuz I hated Statistics in college). The more recent statistics are not all the different from what you quoted: HOWEVER, what you didnt say- and I dont know if your book says it or not is that THOSE STATISTICS ARE BASED ON RR TURNING TO SPMS FOR THOSE WHO DO NOT USE A DISEASE MODIFYING DRUG.

If you use a diseas modifying drug, statistically you have up to 50% chance of NEVER having progression depending on whether or not the drug is working.

It was interesting when my doctor told me that since I couldnt tolerate Rebif anymore that he was (at first) willing to let me go med free and do nothing. I couldnt stand that answer. My research led me to LDN. Did you know that patients who have been on LDN for 5 years (to date, internationally) have a 85% chance of being relapse free - and thus progression free? SO, in my opinion, me being on LDN increases my odds of up to 85% of not having any relapses, and thus new symtoms! Of course that is based on the full dosage of 4.5 mgs which takes about 6 months to work up to. (sound familiar? Its also tritrated like Rebif is).

85% chance of stoppping attacks. Vs. 50% by doing nothing. It was a no brainer for me to try this. Of course Im not stupid enough to think that there are any guarantees; but I do know one thing for sure. LDN isnt hurting me. The small amount of the drug which I am injesting isnt causing any liver damage or long term negative effects. There are ZERO reported side effects of LDN hurting patients AT THIS DOSAGE. Patients who used LDN for alcohol/ opiate addiction have reported some liver enzyme spikes however those patients are taking 50 mgs 3 times a day! My entire daily dosage will remain between 1.5 mgs and 4.5 mgs. (I increase to 3 mgs on Oct 28th).

With regard to what Jayhawk said. He is right. One should ALWAYS be prepared. And, to become SPMS isnt the worst case scenario. Live each day as if you didnt have tomorrow, because quite honestly, you have a better chance of contracting cancer, or having a heart attack, or getting in a car accident than you have in progressing in the next 20 years. Thats how scary the odds actually are. None of us know how long we have actually had MS prior to diagnosis....does this mean we should have started that clock ticking years ago? This is why the new school of thought is to put patients on a DMD immediately, and not wait "until something else happens". Doctors and statistics are convinced that patients who are on some sort of DMD, are holding off progression.

Its okay to read. Its not ok to obsess. AND fear is a horrible motivator; so please dont live afraid. More than 75% of the country has something which they are either unaware of or know about. How about all the women who's mothers got breast cancer and we know that is hereditary? How about all the families with historys of Prostrate Cancer? As curable as that is, if its not treated early it can spread quickly and become fatal. Preventative medicine is a wonderful thing. Youre being prevtative by taking a DMD. So am I - even if its "off the beaten path". Do not be afraid. Be proactive!

Hugs,
Nikki
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Old 10-14-2011, 12:52 AM   #6
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Re: Question about progression...

Hey King,

I didn't realize you were so newly diagnosed. I was just diagnosed in June, so I do understand your fears and stresses. I have 3 sons 20, 22 and 24. I'm only 41. I've been sick for over 1 1/2. It's been awhile since I've been able to work. I do plan on changing that. Now I know what's wrong. There were no lesions a year ago. Nothing to point a Dr to MS. I get a full Neuroligical exam every 3 months due to other non MS related health issues. I have my work cut out for me. I'm almost positive on the next MRI there will be more lesions. (Why do I say that) I have had an exacberation since I was diagnosed and I've only been on DMD's now 7 weeks. I've 4 more months for the DMD's to really kick in. So I'm not going to freak out if there are any new ones. On the other hand like JayHawk said, this is the time for me to learn my triggers. No different than my migraines. I have created a world revolving around my migraine. Now I have something new with different triggers. So I need to learn them and educate myself on them. On my MS, not eveyone else's MS. As far as planning yes I am planning for some of the worst. Not because I think the worst is going to happen, but because I have 3 sons that I love so much. I have been giving myself these injections all this time and they just learned about it. They are already so worried about it I just don't want them deciding to try to put their life on hold because I now have MS. That's not why I worked so hard to raise them. So I do have my plot paid for, I will pay for my vault and coffin etc. Not because I'm worried about dying, I just want all of that taken care of so they don't have to worry about it.
The way I see it. the worst I'm going to get for a long time I will see over the next 6 months and thats it.. So within the next year I should have MY MS figured out and maybe be able to go back to work. My going back to work is not just reliant on my MS, but MS might have just helped me with some medical coverage to treat other health issues. So plan big, whats the worst thing that can happen. We all have heard NO before, and MS won't kill us. So whats that saying 'What don't kill us will make us stronger". We are going to be some tough cookies.
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Old 10-15-2011, 08:35 PM   #7
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Re: Question about progression...

Thank you all! It's funny because I really am a planner. I always have to have a plan for everything. I think i'm slightly OCD. But then this comes up and I don't even want to think about it. I'm sure i'll get there eventually.
It's hard to make a plan when i feel totally normal. I really don't feel like there is anything wrong - right now at least. My ON continues to improve and i can only tell the very slightest of a difference when i compare one eye to the other. Obviously i know ON is very serious, and so there is a problem, but other than that, i feel completely like myself.

Nikki - that was exactly the info that the book did not provide and that I was wondering...what the statistics are for people on a DMD. Thank you for sharing this info.

Take care everyone.

 
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Old 10-16-2011, 10:53 AM   #8
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Re: Question about progression...

That is a lot on the radar for anyone. DX, RX, possibly going into a rough patch, arming yourself with information, maybe too much information all at once with important bits not always so obvious. IE Some people NEVER have harsh progression.

Just as there are people for whom DMD have no appreciable benefit there are also those who experienced no relapses or progression. My neuro set me straight on that when I mentioned that according to statistics I have been very fortunate and that I could not really complain if I were "due" for an event as I am well past the "median" time. It is scary to be diagnosed, start treatment, research until your almost frantic. If you are not feeling well on top - it is just natural to be concerned. There are many outcomes NOT included in the worst case scenario and we have opportunity for those as well. It can take time to get the medication doing what it is intended and also for your body to affect some healing.

Spend more time on yourself than MS - which is almost absurd when a person is worried! You hang in there !

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