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What am I supposed to do next?

Hello, I will try and keep this brief 27 yo f

theres a lot to try and fit in

about 5 months ago I was diagnosed with labrynthitis, or menieres diseise or an ear infection after months of what I called ‘spinny room’ and light headedness

a few months before that I had a week of a numb lip (put it down to the braces I was having to fix my teeth) and then a scary morning of having full body pins and needles where I fell down trying to get out of bed. Pityriasis rosea for the second time and just generally exhausted and unwell most of the time.

The ear thing coincided with me deciding to stupidly come off prozac (SSRI) & quetiapine (Anti psychotic) on my own as they were not having any effect and making me feel weird. I tapered down carefully though.

around the time I stopped I developed a really odd sensation when I looked to the right. It was like an electric shock going through my heart and my left arm and throw my balance momentarily and it took my breath away, this was SOOO Annoying and no dr or nurse would listen, (they told me it was because I was hyperventilating, lol I WAS NOT) after a month of this I woke up with a severe cold, a sty, and blurred vision. I waited for the sty to go away but had unusual blurriness of my right eye, it was just weird I couldn’t read with it, and this eye zap thing was going on as well as frequent pins and needles in my feet and crazy leg twitches with also the feeling of air bubbles in thighs and calfs. got sent to eye clinic who said Optic Neuritis and sent me for MRI.

Started researching, everything added up, belly problems, balance problems and fatigue. Changed diet and lifestyle and actually started feeling better. Still get odd sensations most recently whenever I hear music I get chills but they are so intense and painful almost. Hand tremor, my words come out wrong sometimes.

Eye people said all good like a month ago. Thought everything was fine and that was it. Got called in for Neuro app with 3 days notice and went today. He said my MRI was fine but said a 50% chance of developing MS because of ON, told me to buy D3 vits. I was kind of thrown in my appointment and didn’t go through my symptoms properly or anything. I’m now left feeling pretty confused and kind of stupid. I’m not sure what my options even are now? or what I’m meant to be doing? I find an awful lot of dr’s/medical people don’t take me seriously because of my mental health conditions even if its unrelated…

sorry that was so long, if TLDR - Lots of MS like symptoms coinciding with SSRI withdrawal and I messed up my Neurology appointment, 50% chance of MS developing.

You are so right in general about the risk of anything physical the matter being put down to mental illness, but actually on this particular occasion, I think you’re OK - they have taken you seriously and done the needful (dx of ON, hospital neurology referral, MRI etc). The uncertainty about exactly where you stand now and what happens next is, I’m afraid, just exactly what this bit is like for most people in your situation. It’s a while since I’ve been there myself, but been there I have and I know it’s no fun.

It really is a matter of wait and see and try to get on with life as normally as you can. I know how unsatisfactory that sounds (and is!) The way I tried to look at it was: I would just try to keep calm and carry on until I had a better idea, or until the dramatic new neuro symptom arrived that sent me back to the doc. Unfortunately, that new symptom happened in my case, but it might not happen in yours, as your neuro said. Hope for the best, and good luck.

Alison

You will find that a letter is sent from the neurologist to your GP and you’ll be sent a copy of that letter. So you might find you understand slightly more when you get that. Unfortunately having a neurologist throw comments like ‘you might develop MS’ and ‘buy some vitamin D’ leaves you standing outside the consulting room door wondering: ‘what the £#@ just happened?’.

What might help more is knowing what to do if something untoward does happen neurologically. Ie, can you get a further appointment with the neurologist? You can ask your GP that.

You should also perhaps see your GP and ask to have your vitamin D level checked. Once you have a starting point you can think about maybe taking some vitamin D. The idea is that vitamin D should help to ward against MS relapses. I don’t know if taking it will do anything at this point to prevent you actually developing MS or not as the case may be.

Meanwhile, perhaps the best thing you can do, or try to do, is put it out of your mind until and unless something else happens. I hope you are able to do that.

Sue