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

[Thinkimjob]

Replying to another thread, started thinking...
I'm sure some of you were relieved to have an answer, but it was just about the worst day of my life.
I remember asking the neurologist, how am I going to tell my parents, and sobbing my heart out, sitting on my father's knee (age 27).

I'm an only child,

I was still fit, active and mobile.
Dad took me to a bar and we had a few, quite a few, stiff drinks.

He told me all sorts of family secrets I'd never heard before. (I had a twin who died at birth, etc.)
Slept with them in the motel bed that night.

Next day went shopping in the Queen Street Mall in Brisbane while waiting for the next test.

Got lost, crying, unable to believe it and so, so scared because I knew what MS was.
And I wanted to believe it would be all right, and I knew it would never be all right ever again.

[pennstater]

I was blindsided by the diagnosis. 13 years prior, it had been raised as a possibility (1993), but followed for a year and that was it. Had mild, seemingly unrelated symptoms that mostly went away or I learned to live with during that period.

So, to hear MS after brain and cervical spine showed numerous active and inactive lesions, learning I had ON at some point, and failing neuro exam, I was shocked. Little denial, but 2nd opinion with one of the top two MS neuros in Philly at time, squelched my denial.

My neuro at time was very compassionate. He loaned me lots of material, gave me resource info, but when he showed lesions in C2-C8, scared me to death. I am fortunate to still be walking and lower body mostly not impacted, but that day, I could only think I would be paralyzed soon.

Diagnosed at 42, I still ran to my parents, and then bawled. My only other reference of MS was an old neighbor from 1970-1992 who was fully paralyzed and Annette Funicello.

Then at neuro's urging, learned all I could about MS. I think that helped me. But it took a good 18 months to get off the emotional roller coaster and another 6 months to really get back to myself and start living fully again.

I also rank diagnosis day with my worst day (excluding deaths of loved ones). I was fortunate in my neuro, can't imagine going thru it with someone more detached.

[SNOOPY]

Hi Thinkimjob,

but it was just about the worst day of my life.

Pretty much how I felt.

I remember my Neurologist telling me I had Multiple Sclerosis. I looked at him and said, "Ok, how do we fix it." Obviously, I had no idea what MS was. He explained the basics, handed me a prescription for oral prednisone and said he wanted to see me back in 2 weeks.

I was stunned and shock. Tears and fear came later.

I went home and called my husband at work and tried to explain what I didn't understand.

Well isn't this a cheery thread you started, Thinkimjob

[hunterd]

I have been diabetic since I was four years old so I learned early on to let things roll off my back and not bother me. After seven years of testing over and over again I was finally diagnosed. At that time I was relieved, but, as I am sure this applies to many of us, I am mad at what I have lost and will never regain (I hope I am wrong).Did I mention the constant testing?

[annedocuk]

I had a 6 month old baby. I cried with my husband and can still picture myself looking at my son and saying " but he is so young". I pictured him growing without a mum.......I was devastated.

[PattiHNC]

shock,confusion.....

When I 1st noticed symptoms, my doctor sent me to a neurologist, who sent me for tests which showed a bulging disc.He sent me to a neurosurgeon who said yes, I did have a bulging disc, but it was on my left side while my symptoms were on the right side. Therefore, an operation would do no good and may actually be harmful. He sent me back to neuro, suggesting they look higher up. More and more tests, which I know all of you can relate to. Finally, the neuro called me and said that while he couldn't be certain, it looked like MS. I didn't know what to think or how to feel. I had heard of MS, but didn't know anything about it. So,I asked him what could be done for it. That is when he said there was no cure, only help to slow down the progression, and that is when the shock set in. He sent me for a 5 day round of steroid infusions, which helped with my mobility, but sent my blood sugars soaring. So,mixed blessings there. This was last November, it was not until Feb. after I wound up in the hospital following an exaberation that I was officially diagnosed. By then, I was pretty well resigned to it, but really scared that I would just keep on going downhill. Truth be told, I still am.

[Seasha]

I think the day we're diagnosed is one of those moments in time where you remember every little detail. Kind of like the day Kennedy was shot (for us older generation) or the Twin Towers in NYC. It's embedded into our brains.

Actually, I was one of those who was sort of relieved to hear the word MS. I had strange symptoms for 10 years prior and was told it was either maybe Lupus, stress, gluten intolerance or a nervous breakdown to name a few, but nothing definite.

I was almost blind in both eyes at the time, but as soon as my vision improved enough to read again, I read and read all I could about MS. Then, when I was well again after the horrendous flare, denial set in. Fear and tears and feelings of loneliness eventually followed~ Wish I had known about MSWorld back then!

To be truthful, fear and tears for my future still catch up with me sometimes. Denial is absolutely out of the picture now.

[22cyclist]

I wasn't shocked. They had mentioned that I needed to be tested for MS 4 years earlier, but I had no insurance. When I got some back, I went back to the neuro and went through the testing, and was diagnosed the next day over the phone. I came back in later that week to discuss my DMT. I try not to look too far into the future and stress about what might happen next. I have learned to live for today as that is what we have and these days are precious, especially if you can still walk. Get involved with your local MS chapter. Volunteer in some way for them.

But, if you sit around worrying about what will happen, you are just wasting your time. Everybody's MS is different, yours may be mild, or it may not be. Either way, try to enjoy the things you do have instead of focusing the things you have lost or will lose.

Take care
Lisa

[palmtree]

The day was cool and gloomy? It was 5:25pm when I reached the stoplight in front of the lab. They were open until 5:30. I had to hurry but felt like I had all the time in the world. My stomach started doing flip flops. I kept repeating in my mind, 'normal scan', 'normal scan', 'normal scan'. PLEASE normal scan.

I got there just in time. No one was in the waiting room. The receptionist handed me the report and the films and I sat down to read them. 'This would only take a second and I could rush off to my linguistics class.'

I read the report over and over looking for the words, 'normal scan'. When I finally realized what it was saying, I felt like I was spiraling down and down to the center of the earth. There was no one in the waiting room. I waited at the receptionist counter because I wanted to blurt out everything to someone , but when the receptionist turned toward me I ran out. Nevermind.

I sat in my class where the lecture was on the linguistic processes of the brain. Don't say 'brain'. I didn't pretend to be cheerful but no one could see the terror I was feeling. After class some classmates came over to talk to me. They were boasting about their marijuana cards, telling me that is what I needed. 'How did they know? How did they know I had IT?

That night I made myself dinner and got all settled before I looked at the films. 'What's that big white spot in the middle of all the pictures?' More spiraling down and that sick feeling in my stomach.

I called my sister. I said, "I just got some bad MRI news." She said, "you're just being dramatic. I'm sure it's nothing. What did the report say?" I told her. She went to the authority Google, then called me back with a thin whine in her voice, "Now, your doctor hasn't told you what it means. RELAX"

I went to bed that night knowing my life would never be the same again.

[KatieAgain]

I was part of a Neuro Cluster. Was not surprised nor was I in denial. My diagnosis came exceptionally fast because the doc knew exactly wat they were looking for...no waiting here.

I was just extremely sad. Life absolutely did not turn out the way I planned. I have to adjust every single year.

[DPL2014]

I kept getting these horrible migraines. The last straw was a headache so bad I couldn't touch my left eyelid for a month. Was sure it was a cancerous brain tumor and I only had weeks to live. My PCP had me go for an MRI and when the results came back he told me I just had migraines. Yayyyy!!! I then read the full report on MyChart (an online system where patients can read their reports themselves) and it mentioned migraines and demyelinating disease.

This sounded like a case for Dr. Google.

Needless to say, Dr. Google doesn't mention demyelinating disease without mentioning MS. I complained until my PCP finally referred me to a neurologist to shut me up. The neuro sent me for an MRI with contrast this time. I checked MyChart like a maniac while waiting for results and that ended up being how I finally found out I had MS. I had a new lesion from the previous MRI and optic neuritis. I had to Google the meaning of every word on the report, but I got my answer.

My initial thoughts were: 1. thank God it's not a tumor. 2. Montell and Ann Romney look great...but they're rich. 3. I'm going to be a huge burden on my family one day.

Moral of the story: ALWAYS be an advocate for yourself and your health! Please look at your own reports and get second opinions! Don't use Google to self diagnose, but use it to figure out what questions to ask the experts. I won't walk into a neurologists office without a list of questions about my results and what new treatments are on the horizon.

I am very thankful for this board (and this thread) and wish you all good health.

[MSW1963]

I was relieved. The only differential dx on the table for the sx that started in late teens/early adult life was mental illness. I was confident it wasn't.

By the time I was dx, I had been experiencing such a classic history of MS sx, for such a long time, I was requesting my neuro's to rule out MS. Of course that just made it mandatory that I be proven wrong. With too many to count brain lesions reported on a 3yr old MRI report.

Not that I really knew much about the long term consequences of MS, and I was on the verge of a breakdown after so many years being told my sx were somatization disorder. Actually, I was in the midst of a breakdown when I realized the number of times I had been deceived <aka lied to> by doc's who looked at my MRI films and declared with such conviction/defiance that everything was within the normal range.

So yah, back then getting the MS dx was a relief. A dx I made a couple of years before it was official. That will affect you for a long time.

[tl-tr3]

My diagnosis day ......

I had a lumbar puncture & a couple days later I got a call that the doctor wanted see me the next day in his office. So I knew that he would tell me I had MS. Since I had optic neuritis a few yrs earlier ,I knew MS was possibly in my future.
So really no shock for me . My family was more shocked & I waited to tell them since I was dx'd right before the holidays. I actually waited until spring -

[1936siols]

MS diagnosis

I was thrilled. I had been to see the doctor and was told nothing was wrong even though my body was split in half and one half was completely numb, walking was bad, eyesight was crazy. I went to the eye doctor. Cars had been driving on top of cars and all kinds of things were happening. By this time I knew I had gone crazy. When my eyes quit moving I was told to see a neurologist. That was when I was told I had MS It felt so good to hear I wasn't crazy That I didn't even think about MS being a bad thing to have.

Lois

[ru4cats]

As I approach my 6th year diagnosis anniversary, I can still vividly remember my 1st symptom. I was walking the dogs, and I noticed a "hitch in the gitalong" in my right leg. I knew there was something wrong, but it took 16 months of visits to physical therapists, chiropractors, nurse practitioners, and 5 MRI's to finally receive the news I had MS. During that time I went from walking to walking with trekking poles, from walking on my golfing rounds to golfing from a cart, from walking in the woods to walking on pavement only. I had retired the year before, and the MS diagnosis was definitely NOT what I had planned for my golden years. However, I was actually relieved when my neurologist told me. It was like, "Finally, I have the answer to what's wrong! Hallelujah! What's next?", and then I collapsed in a flood of tears. The only individual I knew who had MS had had it for 35 years, and needless to say, it's uncomfortable to think of her in her current condition. Luckily, I had been placed with a progressive neurologist, and I'm also approaching my 6th anniversary of being on Tysabri and Ampyra. My progression continues, but it's doable. I feel fortunate there are drugs available to help.