Receiving a multiple sclerosis (MS) diagnosis can be a daunting and overwhelming experience. The flood of emotions, uncertainty about the future, and the sheer volume of information available can leave anyone feeling panicked and scared. As someone who has walked this path, I understand the fear that comes with a new MS diagnosis. In this blog post, I want to share my personal journey, how I coped with the diagnosis, and the advice I would give to those who are newly diagnosed with MS today.
Embracing Calm in the Face of Uncertainty
I still remember the day I was diagnosed with MS, a time long before the easy access to online information that we have today. Unlike now, where the internet offers countless resources to educate ourselves, I faced this diagnosis in relative isolation. Paradoxically, this lack of instant information might have been a blessing in disguise. Without an overwhelming stream of information, my initial panic was contained. My wife and I decided to approach the diagnosis with a belief that things would be okay. We chose not to indulge in self-diagnosis or join MS communities right away, as we didn't want to overthink things.
The Power of a Positive Mindset
Having a positive mindset played a significant role in how I coped with my MS diagnosis. I decided early on that I wouldn't let the diagnosis define me or my life. I was determined that MS wouldn't take away my sense of self or my dreams for the future. Refusing to see myself as a "sick person," I chose to keep my head in the sand to an extent, focusing on living my life to the fullest instead of dwelling on the condition.
The Long Road to Diagnosis
It took me around two years to receive an accurate diagnosis of MS. During this time, my body was telling me that something was wrong, yet doctors dismissed my symptoms or attributed them to stress. I vividly remember one doctor suggesting that my symptoms were all in my head, and that I needed to relax and manage my anxiety. This pivotal moment prompted me to seek a second opinion, leading to my eventual diagnosis. It's a reminder that advocating for oneself and seeking a knowledgeable and empathetic healthcare provider is crucial.
Navigating Treatment Options
When I was diagnosed, treatment options for MS were limited, and access to them was often challenging. Only two disease-modifying drugs were available, and in my country, obtaining these drugs was a difficult process. I personally financed my treatment until I qualified for the official treatment list, a decision that required a significant financial commitment.
Embracing Life with MS
Now, 25 years into my journey with MS, I've learned valuable lessons about living well with the condition. My neurologist once told me that if I made it to a decade without needing a wheelchair, chances were that I might never need one. My wife and I adopted a positive outlook, and rather than attributing my condition to "luck," we acknowledge the power of education, support, and personal choice in managing MS effectively.
Advice for the Newly Diagnosed
If you've recently received an MS diagnosis, here are a few pieces of advice based on my experience:
Educate Yourself: While it's important to avoid overloading yourself with information, having a basic understanding of MS can help you make informed decisions about your health.
Find the Right Healthcare Provider: Don't hesitate to seek a second opinion if your concerns aren't being addressed. A knowledgeable and supportive healthcare team is crucial for managing your condition effectively.
Stay Positive: A positive mindset can make a significant difference in how you approach life with MS. Believe in your ability to adapt and live well despite the challenges.
Build a Support System: Surround yourself with loved ones who uplift and support you. Joining a community of individuals who understand your journey can also provide valuable emotional support.
Advocate for Yourself: Your health is a priority. Don't be afraid to advocate for the treatments and resources you need to manage your condition effectively.
While an MS diagnosis can be intimidating, remember that you have the power to shape your journey. Embrace a positive mindset, seek knowledge, and build a support system that empowers you. My personal experience has taught me that with education, determination, and the right mindset, it's possible to live well with MS for decades. Your journey is unique, and by taking control of your health and well-being, you can navigate the challenges of MS with grace and resilience.
5 comments
I was diagnosed at 37, 18 months after the birth of my 5th child.that was 1992
I got on a trial for Rebif , I told the trial professor that I would be his first cured patient, and became no 1 on the secondary, relapsing side of the trial.
I am also a positive person and with 5 children didn’t have time to think about me.
Life continued until 2008 when I was walking I was told on determination and Nov that year I had a bad operation to put a disc back where it belongs. All good and after this my left leg went straight forward.
Fast forward 2015 and some other bad stuff I got over. If it doesn’t kill you.
My neurologist asked me if I would like to do rehabilitation, I was so excited and so weak.
Now 2024 ,I have been doing rehab on a yearly basis and I still work 3 days, I still drive only about 50km radius. And I have fatigue but work around it.
My balance is not so good but not too bad, a work in progress, and the legs a bit dicky but I have plateaued and just push my limits. It’s a stand off I have with this M.S and I tell my neurologist that we don’t have to listen to all the bad stuff and I want to show him what is possible if we try.
. So from positivity and determination play a part in this journey, but I consider myself lucky how I have it.
My daughter gave me a paper on Ms and the opening line was, no 2 people with MS present the same.
I was diagnosed at 37, 18 months after the birth of my 5th child.that was 1992
I got on a trial for Rebif , I told the trial professor that I would be his first cured patient, and became no 1 on the secondary, relapsing side of the trial.
I am also a positive person and with 5 children didn’t have time to think about me.
Life continued until 2008 when I was walking I was told on determination and Nov that year I had a bad operation to put a disc back where it belongs. All good and after this my left leg went straight forward.
Fast forward 2015 and some other bad stuff I got over. If it doesn’t kill you.
My neurologist asked me if I would like to do rehabilitation, I was so excited and so weak.
Now 2024 ,I have been doing rehab on a yearly basis and I still work 3 days, I still drive only about 50km radius. And I have fatigue but work around it.
My balance is not so good but not too bad, a work in progress, and the legs a bit dicky but I have plateaued and just push my limits. It’s a stand off I have with this M.S and I tell my neurologist that we don’t have to listen to all the bad stuff and I want to show him what is possible if we try.
. So from positivity and determination play a part in this journey, but I consider myself lucky how I have it.
My daughter gave me a paper on Ms and the opening line was, no 2 people with MS present the same.
Hi Ian. I was interested to read your story. I was diagnosed in 2007 but, in retrospect, I had my 1st symptoms in about 1997. I am on Tecfidera and have not had a relapse for some years but I have been slowly progressing and now find it difficult walk unaided. I have recently bought a lightweight, portable wheelchair and have heavier, more robust, wheelchairs which are suitable for the cycle trails in Arrowtown.
Best wishes. Brian
Here is my multiple sclerosis journey (not all bad).
I have lived with MS since at least November 1997 (got diagnosis on November 19, 1997), at age 48 (probably should have been diagnosed on June 21, 1994). I was on medical leave from my law practice from March 10, 2000 until I retired in September 2014.
I also have a lot of ms in my family – a sister and two daughters (that we know of). My sister, Jean (now age 66, diagnosed at age 36) and oldest daughter, Heather (age 47, diagnosed at age 31) are asymptomatic (in fact, Heather runs marathons!). My youngest daughter, Stephanie (age 42, diagnosed at age 17), in the early days had challenges, but other than a bit of fatigue and bladder quickness, is in good shape. Both those daughters have young children”: Heather’s are 8 and 7 and Steph’s are 8 and 3.
Notwithstanding that there are some serious downsides to having MS, I really don’t have any complaints (although it has seriously stressed my wife).
There is no cure and it can be progressive but it almost certainly, of itself, will not kill you. In fact, I read somewhere that the average life lived after diagnosis with MS is 35 years. Since I was 48 at diagnosis, that, on average would give me to age 83. I have said, not totally facetiously, that if you could guarantee me age 83 right now, I might take it (although, as the years go by, I am somewhat less flippant about that thought!).
Anyway, the real challenge is in learning to live with it.
It is probably trite to say, but attitude really does matter. I have taken the view that I now have some different limitations (mostly fatigue and mobility impairment), but I have learned to live with them. It’s like the old poker saying “you play the hand you’re dealt” (and besides, there are no guarantees anyway – I could be hit by a bus tomorrow).
When I was “officially” diagnosed with MS in 1997, I asked my neurologist what I could do to mitigate against the symptoms and further attacks. He told me that “good health is good for you”. At the time, I thought that was a bit flippant, but I have come to see that it was spot on advice.
In effect, he was telling me to watch my diet, get some exercise, keep well rested, keep the stress down and avoid infections. These are all things our GP doctors have been telling us for years, but which we far too often ignore.
My motor skills have been slowly decreasing. From diagnosis in 1997 (November 19, 1997, probably should have been June 21, 1994) until October 2008, my motors skills degraded somewhat slowly. Since then, it has been much worse. Now, neither leg works and my left hand is only marginally functioning. I stopped driving in late 2014 and have been wheelchair bound full-time since mid-2015. I have not slept in a bed since late 2016, as I can’t get up (I sleep amazingly well in my motorized recliner). I am not in any great discomfort.
I have been told that I am a type A personality and that I am an optimist. Given that and my neurologists advice, I set out a personal plan for dealing with this.
So for years (March 13, 2000 to February 1, 2017) I was in the pool five mornings a week – first swimming lengths then, as my legs deteriorated, a form of water jogging. The pool was great because it was non impact and it kept my body temperature down – heat exacerbates MS. I haven’t been able to go since 2017, as I can’t get myself out of the pool any more (although the newly built pool does have good lifts), and would need a care aid to help with changing.
In any case, while I have some challenges, there are some “silver linings”.
First, my GP doctor told me that getting diagnosed with MS added at least 10 years to my life – because I totally changed my lifestyle when I went onto medical leave (I’m now retired). He suggested that my then lawyers’ lifestyle was going to prematurely kill me – long hours of work, high stress, not enough regular exercise, too many client lunches and dinners and meals far too often “nuked” in the microwave late at night before bedtime.
Second, I get to see a lot more of my family.
Thirdly, at my own pace, I am doing some reading (I read about 2 books a week) and writing that I always wanted to do, which I can do ok as long as I don’t have stress or deadlines. I have a few writing projects on the go.
As to treatments, I am not on any MS drugs, but:
1. Sildenafil (Viagra): I have been taking 100 mg of sildenafil (Viagra) every second day since September 2013 – it has done wonders for my bladder. See:
- 1. Spain 2011: www.sciencedaily.com/releases/2011/05/110519090354.htm;
- 2. Brazil 2012: www.hindawi.com/journals/mi/2013/321460 and www.ncbi.nlm.nih.gov/pubmed/26515692.; and
- 3. Barts and London School of Medicine and Dentistry, Britain 2103: https://multiple-sclerosis-research.org/2013/11/viagra-to-the-rescue/)
2. Biotin 300: Since September 2017, I have also been taking Biotin 300 (mega doses of Vitamin B7 – 300 mg per day). See: https://multiplesclerosisnewstoday.com/blog/2016/08/29/riding-the-high-dose-biotin-train-for-progressive-ms. Don’t really know if it is helping.
3. Diet / Wahls Protocol: I have also tried to watch my diet, mostly somewhat following the Wahls Protocol: https://www.webmd.com/multiple-sclerosis/wahl-diet-ms / https://terrywahls.com.
So, I really don’t have any big complaints (and besides, the only “whine/wine” anyone is interested in comes in a bottle).
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About me (Ian MacLeod, Richmond, BC): I am a retired lawyer. Before law (U.Vic 1987), I spent 2 years in forestry and 15 years as a BC banker (4 as a small town branch manager). I have lived or worked in 15 BC communities, in all regions and sizes, plus 3 others in Nova Scotia and Quebec. I have been heavily involved in volunteer community service, serving on the leadership of over 40 volunteer and community organizations, heading 14 of them (including my class at law school (1987), the BC Chamber of Commerce (1992-1993) and the Clan MacLeod Societies of Canada (2004-2008)). Throughout, I have written widely on public policy issues. I have received several awards, including the Canada 125 Medal (1992), the Queen’s Golden Jubilee Medal (2002), Fellow of the BC Chamber of Commerce (1994) and Outstanding Clansperson Award of the Clan MacLeod Societies of Canada (2012). I have been married for almost 48 years and have 4 adult children and 9 grandchildren. I have lived in Richmond, BC since graduating from University of Victoria law school in 1987.
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Hi Alan
30 years in my journey has been so similar to yours. Friends describe me as the most positive person they know and sure this attitude and informing myself helped me this shitty disease is unfortunately catching up with me and walking, amongst other things, is getting difficult. Go well. Graham