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@LexMD 

EditedLast reply

LexMD

Potential diagnosis

Hi all, new here. Was suggested to visit by a work colleague. 2021 I had intermediate uveitis, at the time I also had problems with my hip and a an endometriosis flare up. Absolutely did not think these were related at the time, now looking back they absolutely could have been. Had a load of blood tests and a chest x-ray and everything came back fine. All hunky Dory. Had regular (6-monthly ish) follow ups booked in with the opthalmologist for my eyes. 2022 was filled with prostap injections for my endo and a steroid injection for my hip, and finally a miscarriage on Christmas Eve. 2023 started with a uveitis flare up again, and loss of some of the vision in my right eye. Now as you can imagine, I was (and still am) pretty fed up with my body at this point. So I figured the dizzyness, fatigue and depression I was having was to do with how p*ssed off I was at my body falling to pieces. Friday I went back to the opthalmologist for a follow up as the vision loss wasn't improving following first steroid drops, and then oral steroids. I'd also had some tests in the medical physics department of the local hospital. Turns out I have optic neuritis. The opthalmologist thinks this could be MS and has referred me for an MRI, and asked I get the GP to refer me to a neurologist (I've done this today). I've always been pretty clumsy, and I often get pins and needles/numbness in various limbs, particularly when I'm lying down. I've always been light headed too, and often get dizzy spells without warning. So, after that hugely long rant/post (apologies) I guess I'm asking what should I expect over the coming weeks/months? Is there anything I need to say or ask the doctors/neurologist to make sure things go smoothly? Is there anything I can do to take care of myself in the meantime? I should add I'm in the UK (north east) Thanks in advance for any help and advice:-)
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@mellowmedusa
@mellowmedusa
 

I suppose the hardest thing for you and for a lot of people going through a potential diagnosis is the uncertainty. The optic neuritis is suggestive, but not definitive. For diagnosis, you'll need an MRI first and then likely a lumbar puncture. If you look up the McDonald criteria, that will give you an idea of what you'll 'need' to be diagnosed with MS. You may end up receiving a diagnosis of CIS (clinically isolated syndrome) which may or may not progress to MS. The presenting features of MS are so variable - I think it's unlikely the endometriosis/hip issues are related but the dizziness may be... Likewise, outcomes and prognosis are so variable as well - but if it helps (if you're diagnosed), an initial presentation with optic neuritis and sensory disturbance as well as female gender/age<40 puts you in a general group with better outcomes, statistically speaking. While you wait, I'd look at the lifestyle modifications that really can help outcomes with MS. The Overcoming MS website is definitely worth a look. It's a bit early to seriously consider disease modifying drugs - you'll need a diagnosis first - but good resources are Dr Aaron Boster on YouTube, or if you sign up for the MS-selfie newsletter by Dr Gavin Giovanni.

@mellowmedusa
@mellowmedusa
 

Although, sorry I meant to say, the uveitis and hip pain could be related to another autoimmune condition like lupus - either instead of MS or as well as! Unlikely, but there is that remote possibility...