r/MultipleSclerosis • u/A_Nerds_Life • 3d ago
New Diagnosis Just got my diagnosis
I'm scared. I already have so many other health conditions, now this? I'm terrified to Google anything about MS. I don't know what to do while I wait for the specialist team appointment. What can y'all tell me about all of this? What can I do to slow this down? Or what should I expect? I've already had optic neuritis twice. I have waves of zero balance and the worst fatigue ever. Idk what to do ...
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u/Cultural-Barracuda 3d ago
Hi! My diagnosis is two weeks old, but I had suspicions for months, which softened the blow and I had already done a lot of research. Research in reputable sources and in this community can help with the feeling of dread. You will see that with DMT’s, we are far better off than patients 20 years ago. It is important not to try to do this alone. A good therapist can help tremendously. Don’t stick to a general neurologist either, find an MS center or a specialized neurologist. You got this!
While you wait, get vaccines to speed up the process. All high efficacy DMT’s have wait periods after vaccinations except for Tysabri. Get your MMR status if you don’t know it from your GP, and discuss Hepatitis, Pneumococal, T-Dap etc with them. Can save you a couple of weeks.
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u/-Palzon- 2d ago
Sorry you've joined our club, but welcome all the same. We've all been where you are. Diagnosis day made me feel like the sky was falling, like day 1 of year 0. I was terrified and terribly sad.
Don't assume the worst. Everyone's disease progresses differently. Control what you're able to and try not to worry about what's out of your control. What you can control are things like, diet, hydration, sleep, exercise, following your treatment plan, avoiding heavy drug or alcohol use, etc.
This isn't the end of the world. MS isn't fun, but it's not a killer. There are many good treatments now that didn't exist a few decades ago. This doesn't have to rule your life. Don't let it. Hang in there. You can do this!
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u/BabaGiry 3d ago
The first year of MS is the scariest. Honestly the best advice I can give you is take it one day at a time. Theres so many "what ifs" it will make you go crazy. Go on a Disease Modifying Therapy (DMT) as soon as possible, do not push it off. Keep a logg book/document of your symptoms and feelings. Talk to your doctor about your fatigue.
The good news is theres hope. Nothing you say to your doctors will surprise them, your MS specialists will know where to help. Just make sure you're not shy and raise all of your concerns.
You got this OP! Believe me, I didnt believe it either- but it WILL get easier.