I'm 'luckier' than most as my diagnosis was very quick. July07 I got numbness down my Left side. I was studying, working full time and my mother was deteriorating rapidly with parkinsons so I ignored it and thought it would go away when I had complete my studies in sept.
By dec the numbness had improved a bit but I had a very bad itch in my right arm. My restless legs(and everywhere else) was so bad that I was getting 2 hours sleep a night and couldn't sit still during the day. I still thought nothing of it.
Two friends told me I should go to the doctor as I might have something wrong, maybe something like MS. l thought they were being a bit dramatic to make me go to the doctor. I went anyway as the restless legs were driving me crazy.
I was refered to a neurologist and given a form for an MRI. At home I saw the MRI was for brain and spinal cord and the light began to dawn. I looked up the symptoms of MS and I KNEW.
Ten days later the doctor called me to the office to discuss the results. He told me I had demylenated areas and did I know what that meant. I said I did. I wasn't shocked or angry as I knew already.
A month later the neurologist looked at my MRI and told me, with her back to me, that I had 'RRMS but wouldn't end up in a wheelchair'.
I have been a nurse for 30 years and can't believe that it took so long for me to put two and two together!!
Thanks for the great article and inviting this great discussion.
I knew too. For me it all happened very quick. I called the doctor Monday, saw him Wednesday morning, he sent me to a neurologist who I saw that same day and by Friday we were doing an MRI. We didn't have the results or "the conversation" until Monday, but during the weekend my wife and I concluded that it was MS. We cried about it then, but never again. We decided then to learn about it, from it and to be an example for children and friends. I think we have done that pretty well. We have made a lot of changes that we never dreamed we would make. But we are still happy, alive and participating.
A favorite old joke:
You know to make God laugh? Tell him your plans.
Hi Merely - I remember my diagnosis well - and it was tied in to your own so strangely ... it was terrible news for both of us, but somehow having it come along within such a powerful synchronicity made it seem a lot less scary for me than it would have been otherwise - it seemed like something that was meant to happen, and not just horrible, random caprice.
For anyone out there interested in how Merely and I both found out we had MS together, after a random internet encounter totally unrelated to MS, check out my write up of it here - http://teapotshappen.wordpress.com/2009/05/20/sweet-tea-synchronicity-multiple-sclerosis/ ... even if you're inclined to think such things are "mere coincidences," it sure made it better having someone to go through diagnosis with, even though we never met in person.
I'm still deciding whether I like the way my doctor broke the news to me. I was sent for an MRI after my legs went numb -- and sent to a neurologist for results. I thought I had pinched a nerve in my back on a recent camping trip. The dr did a routine exam and then we sat down in his office to talk. He told me I had lesions on my spine causing the numbness and that I was abnormal in some of the office tests. He waited for my question: What causes those lesions? Then he said I had some type of demylinating disease and that I needed to have a lumbar puncture to confirm results. He had to spell demylinating for me. MS was never mentioned.
I went home and grabbed my medical reference books, went to the index and found demylinating disease. I was shocked to see that basically it was multiple sclerosis. I think I reread those sections five times. I really still didn't get it. When I went in for the lumbar puncture, I asked the doctor: You're not thinking I have MS, are you? He responded that yes, everything pointed to it. Results from the lumbar puncture confirmed it.
I think he didn't mention MS in that first session because I was so clearly not expecting anything serious. He must have been giving me time to go home and figure out some things on my own, and then return a little better prepared.
After the confirmed diagnosis, I went straight from the dr's office to the shopping center and bought a lot of clothes. I have no idea why! It was a strange reaction.
in "73 my first symptom was loss of my left leg. i say loss because for all the control i had over it it might as well have belonged to someone else. i went to a neurologist who called it transverse mylitis, and sent me home to bed with an armful of prednisone,and potassium, mylanta and b- vitamins. it's so much easier today that they know more. i had other symptoms over the next couple years, it seemed like they had a schedule.i was always wondering what body part was going to go out next. in "76 i went back to the neurologist. i hadn't thought of it in years but you were right. i do remember oh so clearly.i was in one chair,my husband was in the other holding my 11 mo.old son. from across his big desk the dr. said now that it's caused trouble in more parts than one-we can call it multiple sclerosis--on the way home my husband said why are you crying? you just have a name for what you had all along.
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I suspected that I had MS,given my age,late 20's,being a doctor's daughter,and studying psychology.I made a self referral to a neurologist,who confirmed my diagnosis,in a cold detached,manner.I was devastated.Confirmation and affirmation of a dark,feared,fear,was the last thing I wanted to hear.I answered the neurologist....just like that in a direct,merciless manner,you confirm my worst fears.I did not return to him,in view of his cold,uncaring,manner!
Jeannette