Undiagnosed and scared

In 2012 was diagnosed with underactive thyroid then in 2015 had optical neuritis in both eyes, had mri which was clear, eyes all cleared up in a week. Since last year October 2023 been having several symptoms. First was right blocked ear infection, then had cold, both cleared now. Then had numbness, which is still present now in February. It started with right face, then left leg, but now it’s the whole side of my left side from neck down to toes, has not affected my movement or muscles, but my temperature sensation is off, that is my numb body parts temperature and to touch things. After gp appointment in November as thought he could give me something for the symptoms, instead sent me to hospital where they kept me for a 10 day stay when lots of bloods, brain and spine mri’s and spinal tap were done. They said it was suspected stroke or suspected ms. The whole of my head now is numb, that includes back front ears mouth tongue throat this numbness is always there. In December after being discharged was a bad month had to take off work as had constant severe dizziness, nausea and then was being nauseous, luckily my gp tried different meds and we found 1 that stops these symptoms. For December also had no appetite. I find if I overdo things I get exhausted and the symptoms are worse. Am now at different hospital as outpatient with neurologist who’s going to do further tests, has already found from previous mri’s white spots in certain part of my brain, my lumber and cervical spine, I’ve got mirror oligoclonal bands in spinal fluid, have high signal in cerebellar peduncle. Going for contrast head mri next week and he wants to book me in for contrast spine mri as well at some point. Last week in work the whole team got the norovirus, I found it ok I mean throwing up for only a day compared to a month in December seemed easy. Problem is that I have no appetite again (which isn’t linked to my numb mouth, just am not hungry) and very slight dizziness now. Have been put on several medications ie statins, blood thinners, gabapentin. Must say since starting gabapentin my left arm, for a while part of the numbness was my elbow bone inside felt like it was made of a red hot coal, but it felt normal temperature to touch the arm, the meds seems to have stopped that red hot coal feeling as now just feels warm.
I just want to know what I have, but getting a diagnosis seems to be taking a while. Have read and watched videos of people with ms and so much of what they say about similar symptoms matches mine, eg found video of guy who mentions his tongue was numb and he also like me find my taste of things is different, the salt team could not help me with that, they were focused only on swallowing. I’ve always all my adult life been fit, healthy and into exercise, which I’ve always loved to do, done few 10km races, tough mudders, boot camps, military fitness, gone to gym ect. But since end of last year I’m scared to exercise and don’t have the energy, not been to gym since October. Any advice, tips or help would be so much appreciated please :pray:

Really sorry to hear about your complex experiences and symptoms. Sorry but I don’t have any advice or tips but I hope you get some answers after the MRIs

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That sounds very worrying for you. I hope that you get some answers soon.

In the meantime, in your shoes I wouldn’t be worrying too much about what exercise you can and cannot do. If you try something and run out of steam or fall over, then there’s your answer. No use limiting and narrowing your life by guessing.

Such wise advice, thank you. Will book a gym class, at least other people there in case something happens. Do miss working out and you are right, no point limiting things merely because I am scared.

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Thank you

Hi,
Just on the exercise thing again, you could try your local parkrun, if there’s one near you. You can do the 5k at any speed, walk it, walk parts of it - all fine. And there are other participants/marshals watching out for you as you go. My local parkrun attracts a number of people who are returning to exercise with/after health issues. Exercise is supposed to be good for you with/without MS, and since you’ve enjoyed it in the past, it’s worth keeping up if you can.

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