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The Anniversary Waltz

The Anniversary Waltz

So here’s a thing I’ve been noticing more and more as I’ve been exploring websites with my MS Head on (aside from the fact that there are a LOT of MS websites/blogs/portals/news sources out there): people marking the anniversary of their diagnosis.

Now, I’m not telling people how to manage their illness. Whatever works for you is fine by me. But it does strike me as a bit odd.

Not least because if your diagnosis timeline is anything like mine it will have gone something like:

  • A series of intermittent weird sensations (“hmmm, that feels odd…”)
  • … which disappear (“hmmm, that was strange…”)
  • … and then come back (“hmmm, that feels odd… AGAIN”)
  • … leading to retrospectively comical series of misdiagnoses [mine included a trapped nerve or sciatica, which did at least get me started doing Yoga]
  • … then things go quiet for a bit
  • Eventually [fourth attempt for me] a doctor takes a deeper interest and suggests visits to a physio and a neurologist
  • Physio rules out anything muscular/physical [interestingly, this guy was the first person to mention MS to me]
  • Neurologist recommends an MRI and/or a Lumbar Puncture
  • And the results from our panel of medical professionals are in…

I have no idea of the date when the final step happened for me. And looking at that timeline, you can see that it was just a guy giving SOMETHING a name – no more, no less.

The symptoms – all too recognisable in hindsight – had been kicking around for years by that point. And like many people, my diagnosis came as something of a relief – at least now we knew what we were dealing with.

Obviously we need to track our own relapse episodes and progression, and I’m not kidding myself that my condition isn’t something that I think about (on one level or another) every day.

But if we keep living in the past (“everything was just peachy before I got diagnosed”), then we’re going to miss a whole lot of what’s good about the present. And speaking personally as a father, life isn’t just about ME anymore (I know, I’m shocked too).

Plus I know or have known people who have been dealt cards which are a million times worse than mine.

Like I said before, I’m not telling anyone how to manage their condition. But I just feel that if I marked the date of my diagnosis every year, it would just be taking me back to the terrified younger me who had just been given a diagnosis he didn’t really understand and which had derailed the path he thought his life was heading.

Anyway, I think it was sometime in August. And I know it was in 2005, because we got married the following year – we had a lovely day, with family and friends, fabulous weather…

That is an anniversary worth keeping. But my diagnosis? I think I can live without remembering that.

This is where we are – let’s get on with it.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • JulesPMH
    5 years ago

    I was just thinking about the quest for the diagnosis today…I’ve posted about it at great length before – in our case (my husband Rob, the MS’er, and I the caregiver) – his symptoms came on, well, suddenly…when he collapsed in his classroom one day and when he came to, disoriented and confused, he could not walk on his own: he was too dizzy to stand – for the next 3 months. Prior to his collapse, there were no signs of illness, and he had been working full time as a substitute teacher filling a vacancy, was the assistant JV softball coach, was rehearsing for the school musical (as Vince Fontaine in “Grease”), AND was going to school part time to finish his Bachelor’s degree and get his teaching credentials.
    Then he was in a wheel chair.
    Diagnosis? Vertigo. (Duh! That’s a symptom, not a DIAGNOSIS, DOOGIE!) Vasovagal syncope. And the ‘can’t WALK’ thing? No idea.
    Once we finally got a good doctor, he was determined to find an answer. He sent us to the “best cardiologist” in Las Vegas for a stress test…on a man who can’t walk…he said it was fine, he just needed to measure at what point the dizziness was exacerbated and Rob would be taken care of…
    Yeah, right. Once my husband couldn’t stay upright anymore, the test we waited months for was terminated – inconclusively – and we waited – a long time – for Mr. “Best Cardiologist”…
    When he finally graced us with his presence, it was only to tell us that my husband was a fat smoker. His exact words were, “You are remarkably out of shape for a man your age. You need to lose weight and quit smoking!”
    When I stopped him there to explain, PATIENTLY, that before his symptoms began, he was living quite actively and was relatively healthy (explaining his lifestyle as I did above), HE stopped ME to tell me that “ONE does not get like THIS overnight!” He then proceeded to tell us that “Weight Watchers is excellent for weight loss and ‘not just for women'” and obviously had no interest in anything else we had to say.
    That summer, within a month or so of that visit, Rob quit smoking, and over the next few months, lost 30 lbs. We, of course, still had no clue what was wrong with him, but in 3 months time, he slowly but surely got better, got out of the wheel chair and on to a cane, and then eventually was able to walk fine on his own. Until the following year, when it happened all over again. It wasn’t until the 3rd exacerbation that MS was even brought up, and even then we didn’t know what it was…maybe we would have if the “best cardiologist” in Las Vegas had a CLUE or even cleaned his ears out and listened to his patients once in a while…
    I was driving by his office today, as I do every so often, and I get the urge to go in and smash every one of his little framed articles about how great a doctor he is…because for every patient I am sure he has helped, I am CERTAIN that are two out there that he has demeaned, belittled, and MISDIAGNOSED, who felt it must just be them, because “look at all those articles! He’s such a great doctor!”
    Look at how long all these commentators had to wait, so often because arrogant bastard doctors don’t have a clue and because they are arrogant, won’t admit it. This disease it HARD to diagnose, THAT is TRUE…but because it is true, there needs to be MORE good information out there, less misinformation, and fewer doctors who think that if they don’t know the answer, then the problem is (a) non-existent, (b) in the patient’s head, (c) a lie, or all of the above. Guess what doc? If you don’t know, I’d rather know I have an uninformed doctor than have my options taken away from me. JUST ADMIT IT!

    P.S. Funny story – my anniversary story (as a chronic pain patient that made my MS’er hubby my caregiver) is the ides of March, 3/15/11…from an accident we were in on the way to his neurologists office, thinking we were going to get HIS diagnosis, FINALLY.
    We didn’t.
    Beware the ides of March. I didn’t. I was mistaken. Oops. Ic:

  • Livingston
    6 years ago

    Hi Steve – I truly appreciate your wonderful story. I was diagnosed back in the ’80s when there were no MRIs and I would NOT let them do a lumbar puncture. Dr. @ Duke didn’t feel that it was necessary anyway. Whew! Thank goodness I don’t remember exactly when I was diagnosed. I was fortunate enough not to have another exaserbation for YEARS so kinda just ignored the whole thing – with the exception of having to live with misc. zaps, zings, lightening bolts and tingling! Nothing they could do at the time so why bother to dwell on it.

    If I wanted to go back and research my medical records, I could find out. Who cares? I was relieved @ the diagnosis also- my grandmother died of ALS. I’ll take MS any day, thank you very much! A brain tumor was suggested to me also. No thanks!

    It is only in the last few years that I have been going to the neuro – what feels like a lot to me. And with filling out the forms I just took a guestimate as to the date – and am sticking to it. 6/1/85 Acccurate within a few months and a few years……

    Lots of brave and strong people on this site. carrie7426 with a great sense of humor about her pre-diagnosis thoughts. laura with an attitude of celebrating life. chinookjo for her persistence and belief in herself. sue for her attitude and life plan. ken for his sage advice and words to live in the NOW. Kim who was able to WALK out of the hospital, thumbing her nose at her doctors, and continues to live a full life, despite the everyday challenges of symptoms. Looking FINE can sometimes be a problem tho – as we all know and I definitely know – because people may not believe you are tired or whatever. “But you LOOK great!!” And that brings me to But You Look So Well who has incorporated a healthy life style into her positive “can do” attitude. Brains leakin’ out your ass. What a visual!!! Greg for being happy with the positive things he DOES have. Christie who celebrates life and her confidence in herself. And DaveR who keeps up the fight not only for himself, but his mom and his son. Three generations. Wow. But it’s not inherited. But genetic??? Huh?

    Anyway, the folks here are amazing. Altho I must say, with so many of us having bad vision I am surprised so many of these responses are in one long hard to read paragraph. Break it up, people!

    Hope everyone is having a great day —- and remembers to do something NICE for themselves!!

    ~~~~Marcia

  • DaveR
    6 years ago

    Steve- I appreciate your insight and thoughts, but having been diagnosed back in 1986 and growing up with a mother who had it all my life to answer your question on why people look at these sites using my own reasoning I do it to stay on top of any new developments in therapy and or medications. When my mother came down with MS she went completely blind and could not speak or walk. She told me when I was younger they thought she could not hear them talk, but she felt every tooth pulled until she passed out and they even used leaches on her. After one year she woke up and could see, and within a month she was fine until after I was born. When I was diagnosed back in 1986 the only drug was Predizone and other steroids which ruined my liver, and in 2000 the MS won the inning after a surgery. I have taken all the ABC drugs, and now I have taken every IV drug which one gave me back the ability to walk but also gave me the fright of my life thinking I was going to die. I have a degree and played sports in college, and before I came down with MS I used to run all most every day which is only a passing dream anymore. I honestly refuse to believe I have to be “disabled”, and lost a fight with Social Security again in that I am losing a portion of my benefits because I tried to work. Just reading and keeping up on the new therapies and drugs to me help me coupe and hope that there will be a cure for this disease someday, and in October I found out my oldest now has this disease. I am hoping if anything I taught him how to deal with this disease, but I know I am not normal since my own therapy is finding the lighter side of things in that once I accept it I make jokes about it. As you know this disease is a very humbling and at time humiliating disease, and as you mention everyone has to deal with it in their own way. I like to do research, and at times I know I have upset doctors because of that research. To each their own, and to be honest it is harder for me to accept the fact my son has to go through life having this disease. It has me questioning a lot of things, but he is smart and has learned a lot from our past. Never give up, and always try to keep yourself healthy enough to fight anything off.

  • Chrisite
    6 years ago

    Right on!!! I relate to both sides because I’d been struggling with all kinds of really hideous symptoms for 15 years, some of which nearly killed me and others more than once. Misdiagnosed, told it was all in my head, that I was a “neurotic, attention – seeking female” and put on psychiatric meds that caused even worse symptoms, labeled with those diagnoses that prevented doctors from looking any further for what might be wrong once they saw that, unable to get up offthe couch for morethsn a couple of hours a day, feeling the life seeping out of me and scared I was dying yet everyone telling me I was “fine” – yeah, the day of diagnosis was a huge relief after that, just to finally KNOW. Yet that wasn’t the day that caused my life to be “ruined,” changed me from who/what I’d been. That happened gradually over those years as the symptoms robbed me of this ability and that, lost my job, marriage (good riddance), family and friends, my home, credit and identity. The day of diagnosis was an afterthought to all that. But I can now “celebrate” learning what’s really important, what my values are, stop letting people abuse me, and how short life is and how sweet, and how to enjoy every moment. I don’t remember the actual date of diagnosis, just that it came at Christmas time, and I while don’t celebrate it exactly, I can look at it humorously as the day I could “officially” stick out my tongue at everyone and say ” See, I TOLD you I was sick!!!”

  • Greg
    6 years ago

    Steve,
    First off I just want to say thank you for your story. Second, I usually don’t and have never wrote anything or replied to any of the stories, but after reading your story I was amazed at how similar and parallel my story is to yours. But maybe that is par for the course. I was diagnosed in 2009 after some weird tingling in my legs which raised an eyebrow to my primary doctor. And like you I know that there is not a day that doesn’t go by that in someway somehow I think about it. But like you said I also have to keep in mind that there are way worse things to be diagnosed with. I’m also a recovering alcoholic and I was diagnosed with MS a month after I got sober. In someway I think my MS has also helped me to stay sober because I know I have to take care of myself and take care of my MS. Life is good today. I have a wonderful family and a great job, and I’m very thankful to God for the progress in medicine for all diseases, and for the support and for stories like yours. Merry Christmas and may God bless you and your family.

  • Steve Woodward author
    6 years ago

    And to you and yours, Greg. Thanks for your comment.

  • But You Look So Well
    6 years ago

    I’ve had MS for about 35 years now, and I had to laugh when I read that remark about “Got an MRI and a lumbar puncture”. When we were exploring why I kept feeling like I had to pee ALL THE TIME, all that was available to me was a lumbar puncture. I do remember the lumbar puncture, because at the time, another guy got one, and he was complaining bitterly about it and loudly. Finally he demanded to know why he felt like liquid was dripping down his back, and an orderly said to him “Because yer brains are leakin’ out yer ass.” This was in the days before political correctness, mind you. I got my diagnosis in August 1981, three years after my first symptom (the MS hug). And I definitely remember the time I started treatment with a DMD, blessed Copaxone. Took me 45 minutes to set up the shot. this was back in the day before the shots came prepared. And I remember the day I had my serious exacerbation that started me down the road to secondary progressive. And I remember the day I started exercising. That was the day I really feel like I started to manage my MS, and even though I am 65 now and haven’t got a molecule of white matter left in my brain, I feel great! No anniversaries for me, just todays. Thank you for your article – this is the only MS site I feel at home in.

  • Kim Imus Schaefer
    6 years ago

    I was 21, and went into the hospital on May 2nd 1991 for ten days of diagnostic testing. That was NOT the “Exact” diagnosis date, but it was the date that changed my life FOREVER.
    I was never able to go back to work again. I worked as an Independant hairdresser (booth renting my own space). My MS just got worse for 4 months after my diagnosis, until I couldn’t feel anything from the neck down or even hold a tissue to blow my nose. But entering the hospital May 2nd 1991 will ALWAYS stick out in my head!!! Even though I had many other HUGE dates in my “MS Experience”, including having to cancel a wedding and being told that I “would never be able to walk again”. And that was suppose to be “what we could hope for” if the chemo (Cytoxin) worked with a 20% success rate.
    I DIDN’T like that answer and was determined to prove them wrong. I did TONS of visualization while in the hospital receiving my treatments. I ended up walking Out of the hospital.
    I don’t look like I have MS today, just deal with LOTS of non-visible symptoms, SEVERE Pain, MAJOR cognitive problems and EXTREME Fatigue.

  • Ken
    6 years ago

    I think that the diagnosis was finally made in 1985 ( June) but it was suspected for at least 5 years before that. The date of my diagnosis loses its importance with time and it just becomes “the mid eighties” to me. If I had one thing that I’d like to tell everyone who recently got this piece of bad news that anything that you wanted to do AND you can still safely do. Do it, do it now and enjoy every second of it because … you don’t need me to say why, but do it!

  • Sue
    6 years ago

    So…in my case, my diagnosis was on my birthday. And only about 7.5 months ago, despite my advanced age! I think I will celebrate each year as I always have – the alternative to getting older is, well, NOT! My new lifestyle includes working out, dieting sensibly, losing lots of weight, and feeling better than ever with a few odd things (feet slightly numb and tingly, balance challenges, etc.). But again, I go on. I can still sing, play instruments, and all that as well as work, so I feel very blessed.

  • chinookjo
    6 years ago

    The diagnosis Anniversary date for me has been important because it was the day I got validation finally for 2 yrs plus of insisting I had something wrong with me ,chasing and insisting on different tests etc, ordering my own in some cases, I know we all see things differently and for December 22nd was the day I got Validation and I will always put importance on it :).

  • Laura Kolaczkowski
    6 years ago

    Anniversaries come in all shapes and run the emotional spectrum from gloom to glee – think of the anniversary observances of the doomed Hindenburg vs the Anniversary of the Wright Brother’s first flight. They are both aviation related yet evoke a different response.

    I had two landmark medical events occur in 2008. I know the date of my official MS diagnosis (Thursday, Sept. 25) but I don’t think of that as an anniversary, rather just another year passing and a reason to celebrate that I’m still doing ok.

    Now my heart attack anniversary is a different story – Monday, January 21, 2008 – and it definitely calls for a celebration. Cheating death doesn’t happen often.

    I have a bigger anniversary coming in a few weeks – 40 years of marriage with the same man – which is more years than many of you reading this have even been alive. Funny, but even though it is a momentous number, it is no more special that the first or 28th or 36th anniversary. May you and your wife enjoy that many celebrations and more! ~Laura

  • carrie7426
    6 years ago

    Thank you for saying this Steve. I also know my diagnosis was in October of 2008 when the “Too Big To Fail” banks were failing. I worked in one of them. While I remember the time, I don’t remember the day, and I don’t hold an “anniversary” I do think back to that time, as I’m sure is inevitable for all of us, but do I really need to relive all of that again? Sometimes I feel guilty for not giving moment of silence. We do it for 9/11. It’s not a happy memory, but we give it the respect it’s due. But don’t we do that in a piece of our minds everyday? And yes, you are so right! Things could always be so much worse. At least I got to live a really good life, even now. I thought my diagnosis was going to be brain cancer. I had optic neuritis and assumed the tumor was pressing down on my eye. I figured they were going to have to peel my face off, take my eye out, get the tumor and then put me back together. I laughed when they came back with the MS diagnosis. I certainly don’t laugh anymore,, but I still appreciate the life I have. Thank you for sharing your thoughts.

  • Steve Woodward author
    6 years ago

    Hi Carrie – thanks for my very first comment on here!

    After a short course of Cognitive Behavioural Therapy, I’m a firm believer in ‘mindfulness’ – being aware of what’s going on NOW, rather than dwelling on the past or worrying about the future.

    With a slight caveat:
    Obviously I’m human, so I can suffer the odd ‘long dark night of the soul’ and can complain until the cows come home. But on the whole I’m TRYING to be better for the sake of the people around me.

    As an aside, my big phobia is any kind of operation on my eyes so thanks for sharing your ‘face peeling’ imaginings so very graphically…! I’m going for a lie-down now. 😉

    Steve

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