Anonymous #1 9w

I had vision loss in one eye that took me a while to notice but then went to the ER and they did an MRI. I have very obvious MS lesions/ optic neuritis and classic “dawson fingers” pattern so they knew right away it was MS. I was hospitalized and given a steroid course and my vision came back. A month later I met with my MS specialist and got started on rituxan and my lesions have shrunk since. This all happened like 8 years ago when I was 14.

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Anonymous #1 9w

MRI is the only test you need to diagnose MS tbh, if you’re having mobility issues but no lesions on your spine, it’s probably not MS. The lesions are REALLY obvious no radiologist can miss it unless they’re absolutely incompetent. You have to remember the biological cause of MS, it’s a demylenating disease so demyelination (plus usually inflammation during flare ups like I had with my eye) will pop up bright white on MRIs

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Anonymous #1 9w

That being said I’m not a doctor ofc at all but I’m pre med and learned to ask tons of questions over the near decade I had this disease plus been involved with focus and study groups at my MS center and shadowed one of the docs. What I noticed makes docs suspicious of MS is usually asymmetry with these flare ups so I would really emphasize that if I were you. Good luck to you I hope you find the answers you need!

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Anonymous OP 9w

But I also have other problems like memory loss vertigo difficulty swallowing. I have like 15 different symptoms that I deal with on daily base I got a MRI of my spine my entire spine without contrast and they didn’t see anything but I am getting a MRI of my brain with and without contrast soon and I’m hoping they find something

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Anonymous OP 9w

I’ve been dealing with this for three years, but the nerve symptoms have been for a year, but the memory loss has just started and the difficulty be holding my arms up and stuff like that have gotten progressively worse that it really scares me

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Anonymous #1 9w

I’m sorry that sounds like a lot to deal with and really do hope you find the answers you need. I personally never experienced any of those symptoms or really any other symptom aside from the vision loss and now possibly some leg weakness. Idk what advice to give bc I wasn’t in a position where I had to advocate for myself. I didn’t even know what MS was until the ER doc told me. All I can really say is MS presents itself quite clearly from what my specialists have told me.

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Anonymous OP 9w

Yeah, it definitely is a lot. I just want to get a diagnosis cause I’ve been dealing with it for so long. We’re trying to get this brain MRI and if nothing comes from it, I’m just gonna go to the ER and see what they can do for me because I can’t get into neuro till February

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Anonymous #1 9w

I mean all the ER did for me was an eye sonogram lol and MRI. They also did a spinal tap but that was more so for ruling out lupus than diagnosing MS. In the meantime, I wouldn’t worry abt the progression part if I were you and if it is MS. My specialist says I have a very mild case and even then it was a super aggressive flare up (my left eye vision was like 75% black, literally blind) and I bounced back. Young ppl have great prognosis

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Anonymous #1 9w

I also know 2 other ppl who had lost pretty much all feeling in their legs at some point but got it all back after the steroid course (used to treat flare ups immediately) and then treatment. MS diagnosis and treatment has come a very long way honestly

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Anonymous OP 9w

I also have something called FAP that can make me have tumors and stuff so I wanna make sure that’s not pressing on places in my head and some of the stuff I could possibly have could be symptoms that just will never go away cause it’s just eating at my nervous system so we just wanna make sure it’s not permit damage but trust me I have a team of like 15 doctors right now so I’m good. I just don’t have neuro out right now.

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Anonymous OP 9w

That’s really scary, but I’m glad you’re feeling better. I’m guessing that is related to your MS but I didn’t think spiral taps could rule out lupus. Also not in a creepy way but how old are you? I’m just wondering because I’m 19 and I’ve been doing this stuff since I was 16.

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Anonymous OP 9w

That’s definitely good to hear!!

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Anonymous #1 9w

Sorry it can be idk this was a type of lupus neuropsychiatric lupus (NPSLE

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Anonymous #1 9w

They thought I had CNS lupus at some point bc of abnormal dsDNA and ANA levels but those returned to normal after my flare up and my specialist was like yeah it’s def MS. I’m 21 now, diagnosed at 14 so I’m fuzzy on some of the more medical details bc I had no clue wtf was going on but didn’t need to, I just trusted my doctors and went along with it

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Anonymous OP 9w

Oh, OK. That makes so much more sense. CNS lupus is also something I’m looking at. I’m so sorry you had to go through that at 14 and thank you so much for talking about this.

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Anonymous #1 9w

Ofc I’m happy to help. And tbh the MS and blindness wasn’t even really the hard part for me, it was the hospitalization, steroids, the bazillion MRIs and infusions. I understand a diagnosis can bring relief to some people but that wasn’t the case the for me. Even now my doctor started spacing my infusions out to every 9 months but looks like I’m going back to 6 :/

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Anonymous OP 9w

That’s horrible. I’m so sorry. Yeah, I definitely have just been waiting for a diagnosis. It’s been two years of me dealing with this and it has been the hardest thing I’ve ever had to do and I have not had a day relief. Obviously, you probably haven’t since you were 14 that’s the worst thing ever and to experience is so young is heartbreaking

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Anonymous #1 9w

I’m honestly pretty glad I was diagnosed young bc a)pediatrics healthcare providers are the SWEETEST ppl you’ll ever meet b)tho treatment sucks, prognosis is thankfully awesome for young ppl c)the annual MRIs helped them catch a small unrelated benign brain tumor I had (my brain loves to throw fun surprises ik) and I was able to have surgery, get it removed before it caused any symptoms

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Anonymous OP 9w

That’s good. I’m glad that you have a good prognosis and yeah, I’ve been hospitalized twice for 10 days in a pediatric hospital and they are so so kind. I’m hoping I’m still count as a pediatric in the hospital that I might go to I think I will. They are the best people ever but I’m glad you had a great experience and I’m hoping you start to feel better and that they like symptoms aren’t based on something bad in your MRI

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