WHO was your frame of reference @ diagnosis?

[Thinkimjob]

No one famous. Two women from my home town (population 80) both had it. Both were in wheelchairs by the time I was diagnosed, so I wasn't confident. One is now in a nursing home, and the other is as they say no longer with us.
And my old Maths teacher. She was diagnosed a bit before me, and had the benefit of the old interferons. Didn't work so well.

I read a very old (like early 1900s) second-hand medical textbook while I was waiting to be diagnosed. No google in those days. Strangely enough, the progression of MS described in that old book has been uncannily similar to my experience, just delayed a bit thanks to the drugs.

[palmtree]

I wish I hadn't known about MS. This has come up many times so you've all probably heard my story. When I was growing up we all watched my aunt suffer a grueling case of MS. It was probably PPMS but in those days they didn't distinguish.

Our family was very close knit and there were many Sunday dinners. I always felt a knot in my stomach whenever they would arrive. There was the clanking sound of the wheelchair as my uncle got it out of the trunk of the car. Then I would hear my aunt screaming in agony as her husband insisted that she transfer herself. She would say, "I can't". And he would say,"you just don't want to."

Then he would wheel her in and put her in a corner so noone would have to look at her. Her hands trembled so much she could not use them, her face was riddled with acne, her hair greasy and unkempt and she wore bobby socks with a plaid pleated skirt. She couldn't talk-only wail.

Later, she spent ten years in bed completely dependent on her caregiver. The caregivers kept leaving because the job was too emotionally straining. MS sucks.

[Jules A]

I wish I hadn't known about MS. This has come up many times so you've all probably heard my story. When I was growing up we all watched my aunt suffer a grueling case of MS. It was probably PPMS but in those days they didn't distinguish.

Our family was very close knit and there were many Sunday dinners. I always felt a knot in my stomach whenever they would arrive. There was the clanking sound of the wheelchair as my uncle got it out of the trunk of the car. Then I would hear my aunt screaming in agony as her husband insisted that she transfer herself. She would say, "I can't". And he would say,"you just don't want to."

Then he would wheel her in and put her in a corner so noone would have to look at her. Her hands trembled so much she could not use them, her face was riddled with acne, her hair greasy and unkempt and she wore bobby socks with a plaid pleated skirt. She couldn't talk-only wail.

Later, she spent ten years in bed completely dependent on her caregiver. The caregivers kept leaving because the job was too emotionally straining. MS sucks.

Your aunt's story is heartbreaking and sadly I would imagine not as rare as many here would like to believe.

[Marie12]

I am so sorry your aunt dealt with this stuff

I know, even my niece doesn't understand. I am not allowed to attend holiday dinners at her house. Why? she says it makes her children sad. I think they are old enough now, for her to start explaining things.

Not everyone has that new rechargeable car to race. What about residents of other countries, does she not need to explain their plight. I have stopped being quiet. Hello, wake up!!!!!

[Zuzus11z]

MS was something I had only heard of - in papers, in conversation, in books - prior to Dx (4.4.12). After Dx my reading began. St. Lidwina, Joan Didion, and yes, Richard Pryor became my patron saints of reference.

[palmtree]

Your aunt's story is heartbreaking and sadly I would imagine not as rare as many here would like to believe.

My doctor insisted that my aunts case was extremely rare. She was trying to get me to feel better but I was hard to convince:

[Tawanda]

her hair greasy and unkempt and she wore bobby socks with a plaid pleated skirt

I had never heard your Aunt's story, but it had so many layers of tragedy. I recently told a friend about how I remember my MS mother who was very reminescent of your aunt. I remember her constant "bed head" (would it have killed someone to take a wet comb to the back of her head once in awhile??). I also remember the mildew-y smell of the neck brace she had to wear to keep her head up (sometimes I smell a hint of that on my daughter's field hockey shin-guards and I have to put them in the washing machine IMMEDIATELY!).

My Dad would get frustrated and lose it with taking care of my mother but he had 5 kids, 2 jobs, and going to night school to get an advanced degree so he could get a better paying job. Night school had to go, and the five of us kids tried to eek out a "normal" existence while caring for our mother and house, let alone ourselves. If my mother looked that bad, you can imagine how wretched us kids looked when we got to school (mind you this is long before bullying was even addressed at school-it was still a right of passage then)!
She had MS for just 12 years. If there had been better care, she probably would have lived longer, but to what end? I was 8 when she passed (and it was only a year later when my Dad remarried, but that's another post).

I think ther sheer terror of my mother actually propels me to get out of bed, to walk the dog and try to get myself to the Y. Don't get me wrong, I feel like poo-poo every day. Physically, I don't have those "good days" in the "good days and bad days" legend I have often heard about in regards to M.S.. All I can say, is as bad as it is, obviously it could be worse...not that this is a huge comfort or anything!

[KSeraSera]

I didn't have one. I still don't know anyone personally in real life, not just the media, that has it. I vaguely knew what it was when I was first told I would probably have enough lesions in 3-5 years to get a definitive dx. Then I just read as much as I could. Once I did get the dx, and told others, some folks knew someone else who had it. Those stories were both encouraging and frightening, some functioned almost normal and some were dead from complications. So all I knew, it was a crap shoot and everyone was different.

[Aqua10]

mine was very close

My best friend's father had MS the entire time I knew her, and died of it shortly before I was diagnosed. For over a year prior to his death, he was in a respirator that breathed for him because he didn't have the muscles in his diaphragm to do it himself. This was in the 1980s--no meds existed yet, really. Imagine my horror when I was diagnosed. So grim.

[Tawanda]

Consequently, I have fears and emotions not really relative to MY life and MY MS. I have to battle to keep it real and not be fearful

Excellent advice. My MS is mine alone. I can't assume the most horrific case scenario is inevitable. Hard not to "go there" at the beginning, when you are first diagnosed.

I suppose you have to brush off the initial jolt of "worst case MS scenario" thinking as best as you can and live your life. Sadly, it's been 10 years for me and I am still working on overcoming that particular fear factor. Comparing notes with you all has been very therapeutic, however!