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October, 2024

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Anyone here have MS / know someone with MS?

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johnnyBuz
Posts: 1438 - Karma: 1,270
I've been having some vision problems in my left eye (blurry, cloudy vision, lack of clarity, etc) for like 4 days and today I went to see an eye doctor. He told me I have optic neuritis which is basically inflammation of your optic nerve with no real known causes.

I have to get more tests done on Monday but the troubling thing is optic neuritis is one of the first symptoms for diagnosing a person with MS (multiple sclerosis) and now I am starting to freak the fuck out thinking about worst case scenarios like being in a wheelchair by 35 and not being able to ski anymore.

It could turn out to be a viral infection or nothing serious at all that will work it's way out in 2-3 weeks but I've never been a "lucky" person and I have this bad feeling in my gut that it may be something serious.

Oh and I got this news today on my 26th birthday. Talk about a great way to start your day!

Sorry for the depressing post but this is the first place I wanted to share. My vitality and love for adrenaline and action sports is the one constant in my life and over the last year I've developed a real love for freestyle skiing and the thought of that being taken away just has me real scared right now.

Anyway, on a brighter note, I will be getting shitfaced tonight for my bday and trying to get my peepee wet!
Mar 22 2013 5:09PM
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El_Barto.
Posts: 11661 - Karma: 24,354
Backflip the 90 footer before its too late
Mar 22 2013 5:17PM
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johnnyBuz
Posts: 1438 - Karma: 1,270
Haha yah man talk about sending yourself out on a high note. If I ever learn to spot my landing properly and can speed check it right maybe I'll throw it in the next few years. That would look beyond badass.
Mar 22 2013 5:39PM
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.Rybak.
Posts: 9017 - Karma: 9,864
I thought it happened because of the kid landing on your head?
Mar 22 2013 5:39PM
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johnnyBuz
Posts: 1438 - Karma: 1,270
I thought they might be related but I don't think so -- and to be honest, at the time, I had no idea what I was dealing with and didn't really want to share that with NS. Eye started getting blurry Tuesday and I can't really pinpoint if the snowboard hitting my head made it worse or not or if the inflammation just gets worse on its own until you take proper medical action.
Mar 22 2013 5:53PM
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207
Posts: 8969 - Karma: 3,846
Damn +++vibes man, hope for the best. Prayers your way
Mar 22 2013 8:37PM
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*SID*
Posts: 3133 - Karma: 975
Most of the time it's nothing at all, I wouldn't worry too much about it. I hope for the best.
Mar 22 2013 8:41PM
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El_Barto.
Posts: 11661 - Karma: 24,354
Backflips off of anything are beast. Backflips off of a 90 footer is god mode territory. Dont get me wrong, i hope you dont have ms. But if you do you better throw down like a mofo while you can. Bitches love backflips.

My sisters friend has ms. The only thing thats noticable is that shes clumsy and will drop shit frequently
Mar 22 2013 8:42PM
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Maturin
Posts: 132 - Karma: 78
Keep your head up. And while it's up, put some books, articles, all you can in front of it. Read until you can't stand it anymore, and then read some more. Knowing this (fucking) disease is the most important thing. My father was diagnosed around 1986-88. I was born in '94. MS is a defining factor in my life that touches very close to home.
That being said, do not let the news get to you too much. There is now so much more information available to doctors and patients in today's world. The medication that is now out there works miracles. If you want to talk more about it, feel to send a PM in my direction.

Forgot to mention this before I concluded. The MS society provides lots of information to people that have been recently (or could soon be) diagnosed. They also provide a great network of support, help with treatments, and can point you to doctors that are truly specialized and educated in the disease.
Mar 22 2013 8:47PM
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johnnyBuz
Posts: 1438 - Karma: 1,270
Thanks for the words of encouragement everyone. Just wanted to provide a bit of an update here.

I was diagnosed with optic neuritis which progresses from blurry vision to nearly complete vision loss over the course of 3-5 days. They've got me hooked up on an IV drop of steroids for the next 3 days. Improvement should begin in 30-60 days but it can take up to a year to regain most of your vision. There will probably be some permanent loss of vision but I'm keeping my fingers crossed.

Brain scan was negative (at this time) for white matter brain lesions. That is good news but it is not definitive proof that I am in the clear or that I won't develop MS in the future, it just means I'm at a lower risk than of the lesions existed. Either way, I'll take whatever good news I can get right now.

Still waiting for the blood results to come back and have to speak with the neuro-opthamalogists (sp?) over the next few days.

My season is definitely over for now. A little bummed as I just started progressing to flat spins and front flips and was hoping to hit the huge booters at Big Boulder again before the Poconos shut down.

Best case scenario would be for my vision to improve enough by June to hit MHSSC for 2 weeks which I've has my hopes set on for the past couple months. Don't take this away from cruel cruel world!

Anyway, I'm trying to stay positive and keep a smile on my face whenever possible. It could be worse I suppose.

I'll update again when I know more. I consider you guys a second family now and ended up telling NS before I told most of my closest friends!

PS: How do I get to chad's gap from the bottom of Alta?
Mar 25 2013 9:17PM
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Twinjibber77
Posts: 6239 - Karma: 2,354
Sorry to hear that man, that's terrible.
Thank God it'd not related to actually MS tied. My Ex's mom had that and it's one of the worst things i've ever seen. She lives with it but it can have really extensive effects on your life if you wanna live it like a normal person.
Mar 25 2013 9:34PM
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t-roy
Posts: 4041 - Karma: 52
I'm an eye doctor and I have seen a lot of people with MS. I'd say that most of my patients with MS are controlled fairly well with medication. Treatments were usually injections, but they now have oral medication to keep it under control. Many times patients don't exhibit a lot of issues, but there are certainly cases that are more severe. If an eye is affected with optic neuritis, there is usually some amount of irreparable damage, but that doesn't mean for sure that your functional vision may be impaired. There can be some nerve damage without any real vision impairment, so hopefully your steroid treatment works nicely.

Not having any lesions show up on your MRI is obviously a good thing. Try to pay attention to any other strange symptoms like tingling in your extremities, as that can be a common early sign of MS too. It's often not a black and white condition...but I am not a neuro specialist.

I had a cousin that was recently found to have a couple large brain lesions that they thought was MS (no eye problems) but it turned out to be Lyme Disease which is not as big of a deal.

Best of luck and feel free to message me if you have any other questions. I'd be happy to try and help answer them.
Mar 25 2013 9:56PM
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Maturin
Posts: 132 - Karma: 78
I'm very happy to hear that you're in more of a clear area than a few days ago. Any way I can fit in your suit case to get to mhssc?
Mar 26 2013 10:46AM
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johnnyBuz
Posts: 1438 - Karma: 1,270
Haha if you want to try and fit, be my guest! I'm trying to get to Blue Mountain tomorrow for the last day of the season. My vision went from 20/20 to 20/400 in a matter of 3-4 days and the steroids have brought it back to something like 20/100. I can see out of the eye now but I can't read anything for shit, but it should be good enough to ski.

T-roy, I may follow up with you with some more questions. I have a follow up appointment with the opthamologist on Monday and I'm guessing I'll have to go in for follow-up MRI's every couple of months to monitor the brain for lesions?

The rest of the bloodwork will take another 2-3 weeks to get back. Best case scenario is they tell me it's a viral or bacterial infection and I will feel like a million bucks! I think it is promising that my eye has shown improvement though. I thought it was going to be 3-6 months before I could see like this. It's still annoying and I have trouble focusing on people's faces but I'm sure it just needs time.

Either way, I figure there is no point worrying about it anymore right now. It either is or isn't something serious so just gotta live my life and see what happens.

I appreciate all the kind words and support it made my week in the hospital much less stressful.
Mar 29 2013 1:04PM
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proZach
Posts: 7163 - Karma: 919
did they do a spinal tap?
Mar 29 2013 3:48PM
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Maturin
Posts: 132 - Karma: 78
I will be there. Level 1 collab and shorts. Probably going to be a lot of drunk tranny hunting going on
Mar 29 2013 10:55PM
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tcurle
Posts: 1256 - Karma: 5,278
Marphan syndrome
Mar 29 2013 11:16PM
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SwagtasticWalrus
Posts: 1268 - Karma: 184
My bishop:(
Mar 29 2013 11:18PM
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Rachy
Posts: 4355 - Karma: 2,761
glad you're recovering.

As far as MS goes. Way to go freaking the guy out kids!

Not every case of MS is the worst thing ever. My mom was diagnosed with it when I was 20. She lost her vision entirely over about 3 days while on a cruise. Within a few months she was onto a walker. After testing and all that they put her on standard drubs that were out there. These didn't work great. 3 years ago they put her on new drugs. She's 95% of what she was then, but that's also considering she's now 55. She just did a 10k and she's in some sort of old lady walking club. She did have to have a hip replacement since I guess the first medications cause her bone marrow in her hips to deteriorate or something like that, but she's doing great. Every year they are making crazy amazing advancements with MS.

Let's also not forget that although not an uncommon problem, you're a young male and therefor so incredibly unlikely to have it. You may as well consider headaches a sign of brain tumors. Sometimes it's something, but so often it's nothing, it's better to assume it's nothing and just make sure you stay healthy.
Mar 29 2013 11:44PM
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johnnyBuz
Posts: 1438 - Karma: 1,270
Thanks Rachy. You are right about the male/female thing, I read it affects about 2x as many women as men. 26 year old male doesn't seem to fit the "demographic" but you never know.

Anyway, my head is in a much clearer space right now than a week ago. I think I unintentionally freaked myself out a little bit by reading up on all the medical journals, studies, etc. and risk factors. It's a hard pill to swallow going from feeling invincible one day to not having any control over the outcome. I'm glad to hear your mom is doing better as well.

PS: proZach$, they did not do a Lumbar puncture. I think they only do that if the MRI is positive to get a more accurate reading of the damage. Luckily, it was negative!
Mar 31 2013 10:43PM
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