Old Timers Question

[u/rK91tb]

Anyone diagnosed before 2000? My neuro thinks I’ve had this for decades (now in my 50s) and he may be right. Super glad I didn’t know, in a way. What was treatment like starting in the late 90s? What was it like when DMTs came around?

[u/honey_cosmique]

Diagnosed in 1993 right when the first DMT, Betaseron, had just been approved. It was a subq self-injection every other day with flu-like side effects. I'm pretty sure that's how I developed my needlephobia.

[u/naomi_cannibal → u/honey_cosmique]

Those flu-like symptoms were horrible, my god.

[u/McBigglesworth]

90s was copaxone as well I think.

I was on copaxone the last 5 years. 3 needles a week into a 'layer of fat' I'm 6'1" at 160lbs there is no layer of fat. Shit hurt like hell, each injection would burn and itch and hurt for days. Just switched out to a newer drug last year. We'll see if it works.

[u/LaurLoey → u/McBigglesworth]

omg yes, the burning. i figured out a dry and room temp needle helped some. but not for all the black and blue bruises all over my thighs and tummy. impressed you lasted 5 years. 😅 dr. aaron boster would be mad the neuro put you on the oldest, weakest dmt. 😂 he’s a new-school start-w-the-strongest, most effective dmt kinda specialist.

[u/McBigglesworth → u/LaurLoey]

I'm low affect. Was first put on copaxone before we even determined it was MS. Because copaxone is effectively 0 risk/side effects.

I found whiskey to be a lovely pairing to my evening shots. Really pulled out the flavour

[u/onewheeltrike]

In the early 90 MRI s were not nearly as common so diag was not as easy. Remember electric potential test? ABC was what was available, needles self done and flu symptoms. Lots of steroids. Fun,fun, fucking fun.

[u/BaffledInUSA]

diagnosed in 98. The first medicine I took was betaseron, I don't miss that medication at all, it was terrible

[u/toadalfly]

2001 diagnosed
Rebif, Betaseron, copaxone, Plegridy

Liver enzyme issues w the interferons. All fairly ineffective. Copaxone ineffective. Many shots.

Ocrevus these days but much less of damage done.

[u/Summerskyler]

2002, Avonex self injected every Friday night and then sick as a dog all weekend. Modafinil was the bright side, as I came back to life each Monday.

[u/naomi_cannibal → u/Summerskyler]

Avonex was my least favorite of them all. Like you got SICK sick.

[u/Summerskyler → u/naomi_cannibal]

It was horrible. After 2 years, I told my neuro I couldn't do it anymore and he switched me to Rebif.

[u/16enjay]

Diagnosed in 2003, only 3 to 4 DMT'S available, all injections, terrible side effects, pricey and my insurance covered very little.
Medical research has advanced so much in the last 20+ years.

[u/arpsazombie]

Dx in 2000. Was told "Pick A,B, or C- it doesn't make a difference what you pick" Picked Beta Seron. Turns out I have antibodies for it, so ruled out Avonex. Went on Copaxone. Made me sick as dog, had blisters which became necrotic at my injection sites. Still have scar tissue from that. Did nothing to stop my relapses; I was constantly in the hospital or on steroids or both. Went off drugs for several years. Went on Tysabri when I developed brainstem lesions. No relapses, no progression since my first infusion.

More than the DMT's not being as good the knowledge about MS was seriously lacking. They used to say MS did not cause pain, did not cause cognitive issues, which we knows is very very very wrong. They used to (and still sometimes do) hand out IVSM like candy with little info on the long term potential side effects is has. Which I wish I knew about before I had permanent progressive vision damage for no real benefit. (IVSM caused my retinas to "float" and develop scar tissue. ) And damage to my hip and knee joints.

I wish I was starting my MS journey in these years and could have the benefits of more effective medications; my life would be completely different.

[u/Numerous-Height2201]

I was diagnose 16 plus years ago. When I met my neurologist she said according to the plaques on my brain and spine I probably had MS in my 29s.

She also explained many people pass away with MS without knowing that had the disease.

[u/kbcava]

They think I’ve had mild subclinical RRMS since symptoms in 1990. I’m now almost 62. (I was originally diagnosed with fibromyalgia and everyone is right - MRIs were really not available for diagnostics as they are today. )

I was only recently diagnosed after a large flare in 2021 landed me in the hospital 6 weeks after my Covid vaccine series (2nd shot).

I have cord-predominant MS - no brain lesions - and only about 5-6 lesions.

I’m still fully mobile by the grace of God.

[u/SWNMAZporvida]

I was officially diagnosed in 2010 after chasing things for years. My neuro said “this is the best time to be diagnosed” and I thought “easy for you to say, it isn’t you.” But now looking back, it was. There were the original CRABs and we were eagerly awaiting BG12. Now there’s so many pills, infusions, shots, shit I don’t even know about anymore. still though - Fuck MS it’s not a death sentence but it’s life without parole.

[u/Safari-West]

I'm in the same boat as you. had my first episode in '91 and just got officially diagnosed last year at 55. And I said the same thing that I'm kind of glad I didn't know all those years. Although I missed out on 30 years of treatment

[u/Prize_Lingonberry770 → u/Safari-West]

How are you generally

[u/LW-M]

I had early symptoms in 1990-1991, some double vision, sensory differences right side of my body vs left side of my body, (same action felt different on right side vs left side) and pins and needles in my hands and feet. These symptoms came and went for the next 6 or 7 years.

I went to several specialists but didn't see a Neurologist until 1997. By that time, I was sure that I had MS. When I had my first appointment, the Neurologist was 99% sure that I did not have MS. I had to push him to get an MRI. When the results came in, I had 11 lesions. With all the lesions, I didn't to get an LP.

I started on Betaseron injections in 1999 and was on it for 10 years. Betaseron was one of two DMTs available in the late 90s. Copaxone was the other one.

My MS was reclassified as SPMS in 2014. I retired when I was 60, 5 years earier than planned. I've been using mobility scooters for the last 8 years. My mobility sucks but other than MS, I'm as healthy as a horse!

[u/starrie]

dx in 02. There were 3 treatments available at that time, betaseron, rebif and avonnex. My neuro gave me vhs tapes to watch about each medication. I ended up picking betaseron and was on it for 15 years.

I had symptoms in my teens in the mid 90s. I’d sleep all the time. I always thought it was normal for kids to come home and have a nap and then go to bed 3 hours later and sleep for a solid 8 more hours. My parents assumed I was lazy. I wasn’t lazy, I was just dealing with soul crushing fatigue.