Diagnosis day - how did you feel? (trigger warning)

[KatW]

Like so many others here, I was not surprised. After 15+ years of symptoms, everything else had been ruled out. I could clearly see that MS was one of the options for diagnosis. The neurologist reluctantly ordered an MRI and I was immediately diagnosed. It's never a good thing to get a call directly from the doctor.

I'm no longer angry that I wasn't diagnosed earlier but I believe my life would have been different if I was. I am thankful for the doctors who believed something was wrong and treated my symptoms without judgment. I do think there needs to be more education and outreach to doctors and to the public in general about diagnosing MS.

[ClearBlueSky]

I was in denial before I was dx'd. My neuro was po'd with me. I still didn't believe it after his dx, but I did after a second opinion. I cried and cried and cried.

I read everything I could find about MS. I came to the conclusion that I had it since I was a teenager, even though I was dx'd at 44. MS explains a lot. The only good was that my parents had passed and I didn't have to experience the heartbreak of telling them. It took me over year to tell my sister and brother. And only then at my husband's urging.

I was in denial, briefly, but angry for a long time. Now, I can say that I'm not angry. Don't know where it went but am glad it's gone. I am now learning to be grateful for everything I have. I keep progressing and definitely got around better before, even last year. I know I won't be like this for long so I am thankful for every little thing I have/can do today.

[AriD]

It was 1995 for me. I had severe vertigo, hearing loss, left leg weakness and balance issues. My youngest child was just a year old. The doctor said I most likely had a benign brain tumor. I never, even as a nurse, thought MS. So I was shocked. My then husband had a serious mental illness with very dangerous psychosis. I'm sure the stress of dealing with this and trying to keep my kids safe brought on several of my relapses. He was in the hospital and I was waiting to talk to his doctors when my PCP called to tell me it wasn't a tumor, it was MS.
Relief then shock was my reaction. And wondering how I was going to protect my children if I was in a wheelchair. But that was followed by a few years of a neurologist going back and forth on my diagnosis despite several relapses. And then quiet times with stable disability for ten years and I convinced myself that that neurologist was right and maybe the diagnosis was uncertain.
So in 2011 when it reared its ugly head with a vengeance that's when the real shock and devastation came. What if I had had a neurologist who stuck with the MS diagnosis and I was treated properly, would I be in a better place now? Maybe but maybe not. And maybe somehow it stayed stable until me and the kids were in a better, safer life before hitting me again. I am grateful to have had that quiet MS time. Definitely not grateful that the original diagnosis was the right one.
So many different stories and lives connected by this awful disease.

[jnstaylor98]

Ditto

Nov 18,2011. Finally had an answer to a decade of symptoms. Three neurologists and 4 solid years of testing 07-11. I was relieved the search was over. Wife cried. After the appointment I got sick. This was Thanksgiving week.

We took the kids to the zoo in New Orleans as a distraction. We went to the quarter for dinner. I went to say a blessing, bowed my head, and only got out, "Lord, we thank you......" Then my tears fell.

But now, 4 years later, I am thankful. For knowing what it is, and what it isn't; for Drs. that keep me feeling like me. And I'm thankful for therapy, and medicine, and for closer relationships with family and friends

So it was a hard day, but also the start of my new journey.

[Hawkeye]

Fourteen years ago today, May 21st, 2001, I had the first major attack in the journey that became my life with MS.

Standing in my driveway, looking under the hood and listening to a friend describe the car he was thinking about buying, I began to feel very strangely. My right forearm and lower leg suddenly went numb, I felt dizzy, and his voice began to sound like the teacher from a Charlie Brown cartoon!

After a moment, I guess I failed to respond to a question, and he looked over at me. With a bit of shock in his expression, he said, "Hey, are you OK?????" I said, "No... I wonder if I should tell Joan (my wife who as in the house) goodby before I can't..."

I didn't think I was dying, but I had witnessed my Mom suffer a stroke year some years earlier, and suspected that was happening to me. Alarmed, he said, "Should I call 911?!" But, I was beginning to feel the symptoms backing off, and said, "No, just give me a minute."

Within 5 minutes, I felt 98% normal again, and he left after he could see I seemed all right. When I went in the house, I figured I'd better "fess up" to my wife, just in case anything else happened.

She (justifiably) freaked out just a bit. At age 44, I had always been a healthy old horse, and had never been sick or hospitalized in my life. I hadn't even been to a doctor in 20 years (I know, typical farm boy)! I didn't even HAVE a doctor, since my favorite had long ago moved from the area.

My wife called the GP who saw her and our two kids to see if he could see me. He was not accepting new patients, but after hearing my story of the days events said he would squeeze me in the next day. He ended with the warning, "If you feel ANYTHING else starting to come on before you come in, call 911 immediately!"

The next day I went for the appointment, and he poked, prodded, tested, and questioned for quite some time. He left the room, and when he came back he said, "I have made an appointment for you tomorrow with a Neurologist. I think he is the best in Illinois between Chicago and St. Louis." (I later found out it normally takes 3 months of longer to get in to see him.)

I thanked the doctor for seeing me and getting the next step moving so quickly. As he prepared to leave the room, I said, "I know this isn't fair, but could you give me any idea of what you even suspect this may be from what you've seen so far?"

He paused with his hand on the doorknob, deciding whether to answer, then smiled kindly and gave a little nod. "We won't know for sure until a lot of tests and you see the Neurologist, but you could be right. It may have been a stroke... or... it could be a brain tumor, or Lou Gerhig's disease, or MS... or, it could be a little virus and in two weeks you'll be fine and we'll never know what it was."

I thanked him, and went home not depressed at the news, but grateful that he had at least given me something to consider as the parameters of what we might be facing. I knew Who was in control, and that was all I really needed.

I arrived home to an anxious wife peeking out through the window, wanting to know what was wrong with her man. With the kids busy at play in their room with a game she had given them, we slipped down to our bedroom to talk. After I had told her what little I knew, I wrapped my arms around my tearful bride and prayed. I am convinced that even the words to pray came from God that day....

"Lord, if this is to be the end of my life, that's what we want. If you choose to have me be what we would consider 'sick', though, help me to live through it in a way that is honoring to You. But, Father, if you would allow it, our desire is that You would allow me to be well. But... we want Your will, not ours..."

It was 18 months before a confirmed diagnosis of MS came about, but that prayer and the perspective it gave us took all the angst out of wondering what would come next. I've always been very grateful for that.

I apologize for the LONG post, but today was the 'anniversary', and I felt compelled to share the story in hopes that it might be of help to someone else. Maybe sometime later, I'll come back with a shorter story of the actual diagnosis when it happened.

Happy Anniversary??

[Calamity Grace]

April 3, 2001 life changed. I still remember the roller-coaster ride I went through. I already had my spinal tap, already saw my neurologist for the first time, but no one had officially given me my diagnosis. It was a Tuesday and I wanted to catch them before lunchbreak so I called the neurologist's office and asked point blank "Do I have MS, then?" "Oh, I'm sorry. I thought Dr (who did the spinal tap) told you. Yes, you definitely do." "Ok. Thank you."

I didn't even know exactly what MS was let alone how it would affect me. I just knew there was no cure so it was forever. I buried my face in our tan recliner and screamed until it turned into sobs. That was the most alone I have ever felt. Hubby was at work. I didn't dare call him and distract him. I didn't want it to affect his life, too, so I kept see-sawing back and forth in my mind whether I would actually tell him or not.

The next few hours were spent imagining all the things I've always done and probably wouldn't be able to anymore. Queue more crying. When Hubby walked in the door around 4pm, he took one look at me and knew something was wrong.

It's a good thing that big ol' chair could hold two people because that's where we stayed for the rest of the night. It was another 8 years before those thoughts started to come true. I've learned since then I can still do most things, just differently. I do thoroughly miss the trackwork (yes, train track) that I hated then, but that just gives me something to work for.

Now, the good result. Every year on April 3rd we celebrate Steak Day. I save up for it all year and on that one day I order the biggest, juiciest steak I want and don't even think about the price. This year, I cut it into thirds and had leftover steak for breakfast and dinner. They just opened a new steakhouse in my hometown so the next one will be there.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[poppydarling]

My story is so different from everyone else's – I hardly remember anything about it! I was showering and realized that my pinky finger and side of one hand was numb all the way down. My GP sent me to a random neurologist for examination. What I do remember is how self congratulatory she was, after trying to find a second instance of symptoms in my background. When I dug deep in my memory and remembered that at age 26 I'd had optic neuritis, she said: That's it! You have MS! She was so pleased with herself. And she literally shuffled me out of her office to go to the front desk for a…brochure. I was stunned. I blocked her name which I'm sure protected her from my wrath but I so wanted to report her for a lack of bedside manner that amounted to irresponsibility.

Luckily I found a MS clinic in town with an excellent researcher/neurologist who initially felt I had "benign" MS. So I was in a tiny protective denial bubble for a few years. That actually helped me deal with the pretty-much-definite diagnosis later, so I'm grateful.

I remember experiencing Lhermitte's sign in gym class when I was under 10 years old, and I was diagnosed at 40, so I had gone a long time with just mild symptoms. The idea that I'm likely in a secondary progressive phase now is not surprising, but I am super frustrated that there's very little they can do about it at this point in time.

In more cynical moments, I would reword that as "I am super frustrated that drug companies have squeezed every possible dollar out of me and have now cast me aside."

[aisunnen]

Relief!

My PCP Internist said I was too old to "get" MS when I had my first real exacerbation while in Italy alone in 2003, at age 59. So I was thinking about a brain tumor. As soon as I got a neuro contact at USC Medical, I had a (painless) spinal tap which showed the telltale oligoclonal bands, and I was off on the quest for immediate relief via steroids and soon thereafter Rebif. I was delighted to hear I didn't have a brain tumor. So 12 years later, with slow secondary progression and a supportive extended family, I still feel lucky. It was a short straw, no question, but a strange kind of relief.

[KSeraSera]

I wasn't blind-sided because a few years earlier I had been told it was likely I would be dx within 5 years or so. And an acquaintance who worked with MS patients heard my new symptoms and referred me to a MS specialist. So, I kinda knew. And I thought I would be relieved to finally put a name to all the craziness in my body. And I was. For about 10 seconds. Then I was scared to death.

The biggest thing I remember from the whole appointment was the doc showing me a safety pin and letting me know he was going to test my legs for numbness. Okay, sure, no problem. I never identified numbness as an issue. After he was done, I was mortified, sad and just started crying. I couldn't feel the pin in one leg. I couldn't believe that my own body was something that I now had no control over, that I didn't understand and that it had changed so much. And there was nothing I could do. I was very active, yet had no idea how much MS had already changed me. For me, those feelings never left to this day. I learned to live well with those facts, but when I thought of it days, weeks, months and even years later and now, there is still that sadness.

[Maggie2015]

August 31, 2010

Thinki'mjob, I am so glad you started this thread.

It is good to read everyone's stories.

I was diagnosed August 31, 2010. Three years prior, I had gotten married to another graduate student in English, gotten pregnant, given birth to my sweet daughter. Then my now ex-husband and I finished my our doctorates and moved with our 1-year-old daughter to a university where we both had tenure-track jobs. My field was very competitive and I did most of the work "at home"--raising my daughter, housecleaning, making sure we were part of the community.

I recognize now I was kind of a "superwoman," though I certainly beat myself up all the time for not being perfect. I remember getting more and more tired and thinking that I was just overworked, which I actually was. But then one day I was teaching and the room spun in a long slow circle, then whipped around twice. I was stunned, though I just sat down in my chair and gave the students a writing exercise and pretended nothing had happened.

I started having more attacks of vertigo, then my balance became "off," then it became hard to walk a straight line, and then one day my legs were too weak for me to walk. I was initially diagnosed with an anxiety disorder but once I woke up with my legs so weak we went to the ER and I was admitted. They did an MRI late at night and I was diagnosed the next morning.

I remember feeling RELIEVED that I wasn't crazy. They gave me oral prednisone and the vertigo and dizziness went away, and I realize I adjusted to the "off-balance" feeling. I saw a neurologist and got on Betaseron and was determined to educate myself on MS, which I did. I started walking up to a mile a day with my daughter in her stroller and when I couldn't do that because of the weather I did the treadmill.

I never went into a full remission--instead symptoms kind of crept up on top of symptoms. I started to get spasticity in my legs and lose coordination in my hands and have bouts of blurry vision, and the fatigue didn't stop, of course.

But I kept working full-time and being the primary person in charge at home because I didn't want to give anything up--including my "superwoman identity"--and because I was lucky that my MS allowed me to do so.

Then in October of 2013 I had a UTI and WHAM! I got hit with a terrible relapse.

I took a lesson from that experience, and that is what was worse for me than MS was other people's negative reactions to it. I now know that I made a terrible mistake as "superwoman" and that was that I inadvertently surrounded myself with people who cared about me for what I could do rather than for who I was, so when I could no longer "do" I had little worth.

Thankfully my close family and dearest friends, who all lived far away at that time, continued to love me for who I am, and now that I have moved back "home" they continue to do so. And so does my sweet daughter.

I would say I am now learning to embrace my identity as a woman with MS who deserves to give and receive love and be and do good in the world--without being Superwoman!

Maggie

[alice]

My story is pretty anti-climactic compared to others! My mom has MS, diagnosed since I was very young. Her disease course has actually been very mild. My father's sister was diagnosed with MS also when I was in my late teens. (Later, my mom's sister was also dx, but this was after my dx).

When I started getting dizzy on and off in 2009, at age 29, I didn't think it was MS. I only went to my PCP bc my friend/coworker said I was commenting on feeling dizzy a lot and maybe I should get it checked out. My PCP thought it might be allergies and gave me 2 weeks of Nasacort. When that didn't help she sent me for a brain MRI. That showed white matter lesions and I got a little concerned. After a couple of months of obsessing over what else it could be, I got in to a see a neurologist at the MS center, who told me it might or might not be MS, to follow up in a year. One year later I had another MRI which showed more lesions, some enhancing. After a positive LP and some new tingling/numbness, I got my dx on Feb 2, 2011 (groundhog's day).

I was not freaked out, I almost expected it at that point, because I had had a year to ponder. And my mom has had MS for about 30 years and until recently has done pretty well. My two aunts have not been as lucky. I guess I only hope I take after my mom and can earn a nice living and raise my daughter before I lose too much function.

[JerryD]

Two words, my Aussie friend. I Cried ! I haven't had a good day since the diagnosis. I'm hopeful !

[twasabug]

I was happy

I knew something was wrong and the drs thought I was a hypochondriac. So when I finally got the diagnosis I wanted to take the report and stuff it into those drs faces and tell them see you I told you so. And it really doesn't bother me so much as I live pretty much in the now which I learned from having a really bad back that hurts most of the time. but I try not to think how tomorrow will be or how much pain ive already endured.

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[REG53]

My dh and I hugged each other and we both cried.