@Lindsay25 

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Lindsay25

Does anyone else have both MS and IIH?!?

Hey everyone! I live in Southern Illinois. My problem started in October 2021 with eye problems. I was having moments of blindness. My optometrist discovered that my optic nerves were incredibly swollen. He referred me to a neurologist. After all the MRI’s, blood work, and lumbar puncture, my neurologist diagnosed me with Relapsing Remitting MS on February 11, 2022. A month later (March 2022), my neurologist also diagnosed me with Idiopathic Intracranial Hypertension…meaning I have too much cerebral spinal fluid pushing on my optic nerves and my brain). So I’m on Ocrevus infusions for the ms and taking Diamox for the IIH along with way too many other medications. My neurologist referred me to a Neuro Ophthalmologist in St. Louis who confirmed the IIH diagnosis but then told me how rare it is for someone to have both IIH and MS…..so now I have an appointment with a neurologist in STL who specializes in ms, just to confirm the diagnosis. So I’m wondering if anyone else on here has both MS and IIH?! Being diagnosed with 2 neurological disorders in 2 months is a whole lot to wrap your brain around!! (Side note: At the time all of this was going on, I was in the process of building my new house and planning my wedding. The wedding happened in May 2022 and was perfect and we moved into our new home in July 2022! I refused to let ms take those things away from me!)
@dkon

Congrats on getting married and having your own home. It’s a lot to wrap your head around, having more clarity soon may help you. I think quite a few people have multiple auto immune issues going on at the same time. I’m also still not clear about my diagnosis, it’s been taking a while…

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@Lindsay25

Thank you! I wish there was a test that was undeniably accurate for ms. I’m someone who needs to know what’s going on and be prepared for anything. And ms doesn’t allow for either! Every day is different. I hope you find something out soon. The waiting is the worst part. It really is.