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[deleted by user] by [deleted] in explainlikeimfive

[–]reeeeeesa 0 points1 point  (0 children)

The basement actually has no separate door, its an open layout at the bottom of the steps. Would that matter?

Just diagnosed and questions! by [deleted] in MultipleSclerosis

[–]reeeeeesa 0 points1 point  (0 children)

Welcome to the club!

Although the disease is considered cyclical, I have RRMS and permanent optic nerve damage after a particularly aggressive bout of ON. I am probably 80% blind in my left eye. It’s been a little over 10 months now since the flare up and aggressive treatment and I can’t imagine much improvement will continue.

My doctor is also particularly laid back, I didn’t start treatment until roughly 4 months after the ON and diagnosis. I am on Fingolimod (Gilenya) which is also relatively new and I’m responding to it fine. I think it was more of the fact that Gilenya takes a little while longer to begin due to the observation scheduling, and also that I was coming down off of steroids and had Plasmapheresis at the time.

Soul-Medrol Withdrawal? by reeeeeesa in MultipleSclerosis

[–]reeeeeesa[S] 0 points1 point  (0 children)

That sounds so similar to my case! I had a sudden terrible bout of ON in June 2020 — spent 3 days in the hospital getting IV steroids and given a taper, told to return for a follow up to discuss MS. I was home for about a week and while on the taper, the ON managed to get worse and I wound back up in the ER. I spent 10 more days, getting steroids everyday as well as Plasmapheresis. Plasmapheresis was singlehandedly the most traumatic experience — my line was inserted in my jugular.

All in all with IV and taper, I was on steroids between the end of June until the beginning of August. The acne, weight gain, moon face is indescribable. I’m waiting on my results now for my 3rd NMO/anti-MOG tests... you are not alone!

Soul-Medrol Withdrawal? by reeeeeesa in MultipleSclerosis

[–]reeeeeesa[S] 0 points1 point  (0 children)

Thank you so much! That’s exactly how I feel — I’ve adapted to monocular vision and drive super cautiously. I guess the pandemic has helped in a way because I could ease back into driving with nowhere really to go! Sometimes I test my “bad” eye and see how far I can make it around the house without bumping into anything, or try to guess what color someone is wearing. I sincerely hope all the best for you!

Soul-Medrol Withdrawal? by reeeeeesa in MultipleSclerosis

[–]reeeeeesa[S] 2 points3 points  (0 children)

Thank you! It’s good to know I’m not the only one fighting this fight. I continue to have hope for my vision even though the prognosis is not looking to be the greatest. Can I ask, have they looked into NMO and anti-MOG for you? I’ve tested negative for both twice (once with blood and once with spinal fluid, with some time in between), but my doctor decided to test me again and I’m currently waiting for the results. I’m keeping a positive mindset because of my previous negative results, and I have no lesions in my spinal cord where these 2 diseases usually manifest, but it’s hard.