WHO was your frame of reference @ diagnosis?

[Tawanda]

I know of some members who never even heard of Multiple Sclerosis until they were diagnosed with it. I know of one individual who asked their doctor if this meant she was one of "Jerry's Kids"!

Personally, my mom and Richard Pryor were my MS reference points. It never even occurred to me that you don't have to wind up as bad as that.

Now there are people like Montel, Jack Osbourne, Ann Romney and other non-celebrities you might have thought of when you heard the words, "you have MS". I knew about Annette Funicello at the time because of my diagnosis because she made a movie about it. However, she was not visible in the media at that time and that worried me...a lot.

Just curious, guys! Thanks.

[KatieAgain]

I was part of a cluster. So I was well aware of what MS was. However, one of my Moms favorite singers, Donna Fargo came to mind.

[dyin_myelin]

I didn't think I knew what MS was, but when the ER doctor said it was an abnormal CAT scan I asked if it was a brain tumor, stroke, or MS. I didn't know Montel had it, I wasn't aware of any famous cases. The first person that I met who had it was named Janice, from the NMSS at a support group. She answered all my questions and seemed normal considering she had had it for over ten years and took Copaxone. Then unfortunately I began to read on my own. . .

[pennstater]

Mine was a neighbor of my grandparents at the Jersey shore. She was in a wheelchair by 30 and her mother took care of her. This was in the 1970s. She used to sit on the porch and watch us play all day. Sometimes we would play cards or checkers.

Once diagnosed, then found out about the famous: Teri Garr, Squiggy, Montel, Neil Cavuto, etc...

[Jules A]

The wife of a guy who was friends with a former boyfriend had PPMS and was bedridden for years before passing away in her mid 50s. He owned a bar and worked nights but provided full care for her all day. He always seemed grumpy, sad and looked exhausted. He was diagnosed with cancer and passed away about 6 months after she died. I don't think it was a coincidence.

In any event I was absolutely horrified when I heard those terrible words. Still am actually.

[MSW1963]

A 'Jerry's Kids' Here...

That was my only reference for MS, 'the great crippler of young adults' when I self dx'ed via Dr. Google. 20 relatively great years of un-dx'ed RRMS. Being told I was in perfect health, just a little 'crazy', not so great. When I was in remission, I always thought the weird 'episodes' were something that c/wouldn't possibly happen again, a one off type of thing.

I'm unaware of anyone with MS in my family or personal life. I knew about Annette F. She was already in WC and making few public appearences, but when she did, she always looked like the glamorous star.

My mother was adopted and I'm estranged from my father's family so there are lots of unknowns in my family medical history. My father is of norwegian ancestry, so that's as close as I've come to making any possible association as to where my MS may have originated, particularly being born and raised in the sunny deep south.

[tracibk]

I was dx 12 years ago when I was 27........I didn't know what ms was, or anyone that had it, but I knew it wasn't good!

[AnneLouise]

A co-worker's mother had ms. I had no idea what it was, having never heard if it.

I met her once. She could not walk or talk, but she smiled and seemed happy to meet me. But I could see the sadness on the faces of my co-worker and her father. I'll never forget.

Ten years later, I was dx'd.

[SNOOPY]

I didn't have a frame of reference.

I was shooting to tube and the MRI tech asked my husband about my symptoms. The Tech said I might have Multiple Sclerosis

Neither my husband nor myself knew what MS was, never heard of it before and didn't know anyone with "it."

[Pipes123]

No personal reference. I knew it was one of the diseases that people raise money for. I thought it was rare.

[0lala0]

When I was in high school a friends mom Chaperoned a church camping trip. She was fun, and sweet, and kind. She didn't have much energy. She had MS. It was obvious she cherished being able to chaperone us and hang out with her daughter like a friend. Within a year or so she passed away. My frame of reference person didn't make it. I don't know the specifics, but it was MS related. Very scary to have that as my main comparison. My doctor tries to calm my fears, but it's still a bit scary.

[aspen]

I initially had no frame of reference for ms. I'd had an MRI for trigeminal neuralgia and the possibility of a demyelinating issue was raised. I had to ask the receptionist what that meant; when she gave she example of ms, I laughed and said, "can't imagine that." I Didn't know what it was, and like others here, I knew no one with it. How I spent 48 years clueless about it, I have no idea.

My frames of reference now, whether I get diagnosed with ms or a mimic, are those I have met here (in particular in he chat room). I have met some kind, persevering, optimistic, occasionally frustrated, transparent-about-the-process, incredible individuals who have walked this road for up to decades.

You know who you are (I hope), and thank you for being my frames of reference.

[Tawanda]

I didn't think I knew what MS was, but when the ER doctor said it was an abnormal CAT scan I asked if it was a brain tumor, stroke, or MS. I didn't know Montel had it, I wasn't aware of any famous cases. The first person that I met who had it was named Janice, from the NMSS at a support group. She answered all my questions and seemed normal considering she had had it for over ten years and took Copaxone. Then unfortunately I began to read on my own. . .

I am glad you met Janice before you started your own research. I hope she is still doing OK...

ps. OT, but I did read "Shadow Divers"...you referenced that book and your dad in another thread; great book!

[Tawanda]

When I was in high school a friends mom Chaperoned a church camping trip. She was fun, and sweet, and kind. She didn't have much energy. She had MS. It was obvious she cherished being able to chaperone us and hang out with her daughter like a friend. Within a year or so she passed away. My frame of reference person didn't make it. I don't know the specifics, but it was MS related. Very scary to have that as my main comparison. My doctor tries to calm my fears, but it's still a bit scary.

I see you are a junior member and was wondering if you were fairly new to MS. It is only normal for the extreme cases to hit you at first...and hard. You could be passing MSers around you who are doing fairly well, you just don't even realize it..

[Tawanda]

I initially had no frame of reference for ms. I'd had an MRI for trigeminal neuralgia and the possibility of a demyelinating issue was raised. I had to ask the receptionist what that meant; when she gave she example of ms, I laughed and said, "can't imagine that." I Didn't know what it was, and like others here, I knew no one with it. How I spent 48 years clueless about it, I have no idea.

My frames of reference now, whether I get diagnosed with ms or a mimic, are those I have met here (in particular in he chat room). I have met some kind, persevering, optimistic, occasionally frustrated, transparent-about-the-process, incredible individuals who have walked this road for up to decades.

You know who you are (I hope), and thank you for being my frames of reference.

Awesome post and a great tribute to MSW. We have such a wide spectrum of people here. We know there are Richard Pryors, Montel Williams and everything in between. I hold onto hope for future developments, especially in the form of myelin repair for those of us stricken, and a vaccine for our children.