What's going to happen to me?

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purpleberry
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What's going to happen to me?

Post by purpleberry » Mon May 22, 2017 7:52 pm

Diagnosed in March - but posted in the un-diagnosed section of this site in 2016 while going through the diagnostic process.

What's going to happen now? and I'm just going to be frank here.. this is what want to ask.. when are things typically going to get really "bad"? I need to have just a general idea because I want to make a plan for myself (if you know what I mean).

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ThisIsMA
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Re: What's going to happen to me?

Post by ThisIsMA » Mon May 22, 2017 9:53 pm

Hi Purpleberry,

That's the million dollar question for ALL of us, whether we have MS or not! Its really not possible to predict the future.

There is a saying with MS that "Everyone's MS is different." This is very true! Most people don't have all or even most of the possible symptoms of MS. And there are so many possible symptoms of MS that two people with the same diagnosis can have very different symptoms. I recommend not reading the scary blurbs about MS very often. Those make MS sound just horrible, but its not that bad for many people.

A small percentage of people with MS (like 5% or 10% ? ) have "benign MS" meaning that they can go decades with only very minimal or no symptoms. So that's something to hope for! Then a different very small percentage have primary progressive MS with no relapses but a slow or not so slow decline. Most people are somewhere in the middle, with varying degrees of health challenges but still able to lead a full life.

I have read that people with MS on average live a normal life span, but I've also read that people with MS on average live 5 years less than the normal life span. For someone your age that's a long ways away either way. I would try to not get freaked out about your teacher's death. Most people with MS do not die young, although yes, of course it could happen, its not the norm.

I was diagnosed 8 years ago, but prior to that I had mysterious odd undiagnosed symptoms that came and went for many years. In one respect getting diagnosed was a relief, it explained a lot of mysterious health issues!

On the other hand, when I was first diagnosed I really went into shock, which turned into depression, and I spent an inordinate amount of time researching MS online, looking for solutions and for hope. It takes time to get past that stage but you do get past it and life gets back to normal, with the exception of the health limitations you may or may not have, that you learn to adapt to.

Three things I researched gave me great hope:

1) Taking high dose Vitamin D3 reduced relapse rates significantly in people with MS in several studies. Search the vitamin D thread on ThisIsMS for more information. Vitamin D3 seems to really help!

2) Only something like 60% of people with MS choose to take the disease modifying drugs (DMDs). I researched the drugs and decided not to take them. There's a lot of information on ThisIsMS about the pros and cons of the DMDs. After reading up about them I decided that I didn't want the drug's side affects added to the problems I already had. Of course this is a highly individual choice and I'm not recommending for or against taking the DMDs. But for me I felt relieved and liberated when I realized I had the option to not take the drugs.

3) The Wahls Protocol, a book by a medical doctor who has MS: Dr. Terry Wahls, about a very specific nutritional protocol that got her up out of her wheelchair after she had transitioned to secondary progressive MS (and therefore should not have been able to get better). That gives me hope! She has a book, a cookbook, a website, a seminar, and a big presence on the web. I highly recommend checking her out. She is currently doing scientific studies to prove that her dietary interventions work for MS.

I hope this information is helpful. ThisIsMS is a great website! Feel free to frankly ask specific questions. There are kind, intelligent people who have lots of real life experience living with MS, who will reply to your posts.

Disclaimer: I am NOT a medical professional and I'm not giving out medical advice. Do your own independent research and make your own health care decisions with the help of the health care providers of your choice.
DX 6-09 RRMS, now SPMS

ElliotB
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Re: What's going to happen to me?

Post by ElliotB » Mon May 22, 2017 10:08 pm

You are putting the horse before the carriage. 70% (approximately) of those with MS do well often irrespective of what they do. Typically things only get really bad for a few and hopefully you won't be one. So the odds are in your favor. By making smart decisions about your life, you can improve your odds. Use your time as efficiently as possible - make plans to take care of yourself and be as healthy and disease free (of ALL diseases) as you can through diet, exercise, nutritional supplements and lifestyle changes (get plenty of sleep and eliminate all stresses from your life).

Its time to move on in positive directions (hopefully you know what I mean)...

Snoopy
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Re: What's going to happen to me?

Post by Snoopy » Tue May 23, 2017 5:59 am

The journey for each person with this disease is different. Trying to see into the future with a diagnosis of MS is impossible. Live today, try not to anticipate what might happen. Even writing that I am smiling. When I received the diagnosis of MS I was in a really bad place, Physically and emotionally. For quite some years I would run worst case scenarios. In our homes we have made some choices that would be helpful if the worst case happened. Thirty-two years and "worst case" hasn't happened for me...yet :wink:

Relax, enjoy your life and deal with difficulties as they may arise.

purpleberry
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Re: What's going to happen to me?

Post by purpleberry » Tue May 23, 2017 10:52 am

ThisIsMA wrote:Hi Purpleberry,

That's the million dollar question for ALL of us, whether we have MS or not! Its really not possible to predict the future.

There is a saying with MS that "Everyone's MS is different." This is very true! Most people don't have all or even most of the possible symptoms of MS. And there are so many possible symptoms of MS that two people with the same diagnosis can have very different symptoms. I recommend not reading the scary blurbs about MS very often. Those make MS sound just horrible, but its not that bad for many people.

A small percentage of people with MS (like 5% or 10% ? ) have "benign MS" meaning that they can go decades with only very minimal or no symptoms. So that's something to hope for! Then a different very small percentage have primary progressive MS with no relapses but a slow or not so slow decline. Most people are somewhere in the middle, with varying degrees of health challenges but still able to lead a full life.

I have read that people with MS on average live a normal life span, but I've also read that people with MS on average live 5 years less than the normal life span. For someone your age that's a long ways away either way. I would try to not get freaked out about your teacher's death. Most people with MS do not die young, although yes, of course it could happen, its not the norm.

I was diagnosed 8 years ago, but prior to that I had mysterious odd undiagnosed symptoms that came and went for many years. In one respect getting diagnosed was a relief, it explained a lot of mysterious health issues!

On the other hand, when I was first diagnosed I really went into shock, which turned into depression, and I spent an inordinate amount of time researching MS online, looking for solutions and for hope. It takes time to get past that stage but you do get past it and life gets back to normal, with the exception of the health limitations you may or may not have, that you learn to adapt to.

Three things I researched gave me great hope:

1) Taking high dose Vitamin D3 reduced relapse rates significantly in people with MS in several studies. Search the vitamin D thread on ThisIsMS for more information. Vitamin D3 seems to really help!

2) Only something like 60% of people with MS choose to take the disease modifying drugs (DMDs). I researched the drugs and decided not to take them. There's a lot of information on ThisIsMS about the pros and cons of the DMDs. After reading up about them I decided that I didn't want the drug's side affects added to the problems I already had. Of course this is a highly individual choice and I'm not recommending for or against taking the DMDs. But for me I felt relieved and liberated when I realized I had the option to not take the drugs.

3) The Wahls Protocol, a book by a medical doctor who has MS: Dr. Terry Wahls, about a very specific nutritional protocol that got her up out of her wheelchair after she had transitioned to secondary progressive MS (and therefore should not have been able to get better). That gives me hope! She has a book, a cookbook, a website, a seminar, and a big presence on the web. I highly recommend checking her out. She is currently doing scientific studies to prove that her dietary interventions work for MS.

I hope this information is helpful. ThisIsMS is a great website! Feel free to frankly ask specific questions. There are kind, intelligent people who have lots of real life experience living with MS, who will reply to your posts.

Disclaimer: I am NOT a medical professional and I'm not giving out medical advice. Do your own independent research and make your own health care decisions with the help of the health care providers of your choice.
Unfortunately I have already scared myself to death with all the M.S stuff I read online. Was browsing a facebook group about M.S and the comments were from family members talking about the deteriorating health of their loved one and how they couldn't walk, eat, speak, move from multiple sclerosis and that they ultimately died.

This honestly got me so upset. And what I meant by "plan" is to see when it's appropriate to apply for disability and how I can be properly cared for. I don't think the government actually pays for home care in my province so I kept wondering what to do if worse comes to worse.

Believe me, I'm aware that it's unpredictable and I could go either way in terms of outcome.

purpleberry
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Re: What's going to happen to me?

Post by purpleberry » Tue May 23, 2017 10:59 am

ElliotB wrote:You are putting the horse before the carriage. 70% (approximately) of those with MS do well often irrespective of what they do. Typically things only get really bad for a few and hopefully you won't be one. So the odds are in your favor. By making smart decisions about your life, you can improve your odds. Use your time as efficiently as possible - make plans to take care of yourself and be as healthy and disease free (of ALL diseases) as you can through diet, exercise, nutritional supplements and lifestyle changes (get plenty of sleep and eliminate all stresses from your life).

Its time to move on in positive directions (hopefully you know what I mean)...
You can't realistically prevent all disease. This is certainly not my first illness and I am aware from the first one that doing all those things does not necessarily impact things in the way we would have hoped.

My location in Canada also seemingly and statistically made me more predisposed to developing M.S regardless. We have the highest M.S rates in the entire world.

ElliotB
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Re: What's going to happen to me?

Post by ElliotB » Tue May 23, 2017 11:48 am

"You can't realistically prevent all disease."

Perhaps not ALL but it is my opinion that many diseases, especially those of inflammation, can be prevented and that the course of many of them is alterable for those that already have them, but it takes a total commitment and a tremendous amount of work and persistence. One thing is certain, there is no magic pill.

AND most with MS appear to respond favorably to a regime of proven healthier lifestyles.

I am from Canada originally and while your comment is sort of correct, statistically most of the Canadian population does not and will never get MS. The MS Society of Canada says the rate of MS in this country could be as high as 240 per 100,000 people, which may be highest in the world (I did not look that statistic up) but the incidence of MS per capita is still low, especially when you compare it to other illness like Cancer (an estimated 191,300 new cases of cancer will be diagnosed in Canada this year, and an estimated 76,600 Canadians will die from the disease) and Alzheimers (Over 747,000 Canadians are living with Alzheimer's or another dementia).

" doing all those things does not necessarily impact things in the way we would have hoped."

You are correct, but at the least you have a better chance. Starting at the 70% level and working up, the odds are in your favor but there is no guarantee. But doing nothing also has its implications.

I understand your situation all too well from personal experience - things will get better in time. Ultimately your future is in your own hands. Good luck (there is a saying, "The harder you work, the luckier you get.") Another one I like that may be appropriate is "If it is meant to be, it is up to me".

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ThisIsMA
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Re: What's going to happen to me?

Post by ThisIsMA » Tue May 23, 2017 1:14 pm

purpleberry wrote: And what I meant by "plan" is to see when it's appropriate to apply for disability and how I can be properly cared for. I don't think the government actually pays for home care in my province so I kept wondering what to do if worse comes to worse.

Believe me, I'm aware that it's unpredictable and I could go either way in terms of outcome.
I'm relieved to know that's what you meant by "plan". I think it can be wise to plan ahead for the possibility of a poor outcome as long as you also understand that you have better than even odds that the poor outcome won't happen. Of course we all die eventually and disability often precedes death regardless of whether or not the person had a long standing pre-existing condition. So in that sense planning ahead is a good idea for everyone.

So it could be wise to move to a one story home or first floor apartment that could be made wheelchair accessible if needed someday. Or if you're a single person with no family nearby, you might want to move closer to a friend or family, or move to a place that has a spare bedroom that could be rented to a caregiver someday if needed.

Actually I was advised not to make any big changes when I was diagnosed. I'm not sure why. In hind site I think it could have been a good way to channel some of the anxiety I was feeling at the time. On the other hand if you make a big change and then it turns out it wasn't needed, that could be something to regret.

With respect to applying for disability. I'm not familiar with Canada's rules, but I bet there are other "ThisIsMS"ers who could tell you.

In the USA its difficult to qualify for disability and its a time consuming process that you can't even apply for until 6 months after you stop gainful employment. So if you don't have a lot of money saved up to tide you over till disability comes through, you're pretty much up a creek. And the amount of the disability payment you eventually get is tied to how much you earned while you were working, so the people who worked low wage jobs (and therefore need the help the most) receive the lowest disability payment.

I envy the Canadian health care system. :smile:

M.A.
DX 6-09 RRMS, now SPMS

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lyndacarol
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Re: What's going to happen to me?

Post by lyndacarol » Tue May 23, 2017 1:42 pm

purpleberry wrote:My location in Canada also seemingly and statistically made me more predisposed to developing M.S regardless. We have the highest M.S rates in the entire world.
Welcome to ThisIsMS, purpleberry.

If you have not had the vitamin D blood test called "25-hydroxy D," I suggest you ask your GP to order it for you. In view of the following information, it may be VERY important. Ask for your own copy of the test results so that you have the actual result number (and please share it with us, if you are willing).

The Vitamin D Society
http://www.vitamindsociety.org/

About Us:
The Vitamin D Society is a Canadian nonprofit group organized to:

Increase awareness of the many health conditions strongly linked to vitamin D deficiency.
Encourage all Canadians to be proactive in protecting their health and have their vitamin D blood levels tested annually.
Fund valuable vitamin D research.

97% of Canadians are vitamin D deficient at some point in the year, according to University of Calgary research. Worldwide, an estimated 1 billion people don't get enough of "the sunshine vitamin".


According to Dr. Oliver Gillie, Scotland (not Canada) has "the highest M.S. rates in the entire world."

Sunlight Robbery – the failure of UK policy on Vitamin D. Oliver Gillie, PhD (29 minutes), May 2011
Vitamin D Association Experts' Forum 2011


@5:46 ( Dr. Oliver Gillie: Scots have the highest incidence of multiple sclerosis in the world

@21:14 ( Gillie: MS is a very common disease, affecting 1 in 750 people in the UK; in Scotland, MS is even more common, affecting around 1 and 500.

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Re: What's going to happen to me?

Post by robbie » Wed May 24, 2017 2:53 pm

scary blurbs about MS very often. Those make MS sound just horrible, but its not that bad for many people.
I used to read all those scary blurbs about ms and they mostly came true but it took 24 years so just make your life the best u can now, lots of good years ahead:)

I think "horrible" is a perfect word to describe ms, id put another word in front of it as well.
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day

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Re: What's going to happen to me?

Post by ILikeTea » Tue May 30, 2017 8:28 am

Try not to worry too much. Take the time to examine how to live a healthier lifestyle with exercise and good food, as that can do wonders for everyone.

I know one woman who got the diagnosis and completely shut down. Unfortunately, her kids suffered for it. You can just turn off and let yourself deteriorate if you want, and that goes for all medical issues.

Oh, and there are TONNES of people who will say MS is EXACTLY THIS. But it isn't the case for everyone. It's like one person has a loved one with a bad experience and they are super vocal about how EVERYONE with MS is just like that. Uh, no. That's not the case. Everyone is different. But the people who loudly proclaim what MS is is why my mom thought I would go blind, lose function in my legs, and then die, in that order, within the first year, from MS.

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