My MS Story (Part 1)

I’m still struggling to get my head around my recent diagnosis. I find myself getting on with my life, as if nothing has changed and then I’ll have a little niggle, or the tingling in my leg is more prominent than usual. It’ll hit me. And I won’t cry or get upset but I’ll feel really strange for a while.

I’m getting counselling through our company Employee Assistance Programme. If you’ve got this facility where you work, if you ever need someone to talk to, use it. I cannot put into words how valuable it is!

I’ve opted for e-counselling because for the most part, I feel fine. Which scares me. I have it in my head that I should be “not ok” at the moment. Because I feel fine, I wonder if I just don’t get it. Really I want to just dig into how I’m feeling a little bit to see if I’m in shock, in denial, or genuinely as ok as I feel! If I’m not ok, I’d rather drag those feelings up now and deal with them.

I believe that MS started for me in about 2011. I went to the doctors with tingling feet. They felt like they were freezing constantly. Apart from the tingling, I had no sensation in my feet and I struggled keeping my ballet pump style shoes on my feet. I went to the doctors about this and was told “no it’s not poor circulation” and “no we don’t know what it is so off you go for an MRI”. I never heard the results of that MRI, and because the tingling had more or less gone, I didn’t really think anything of it.

My next memory of anything particularly significant was in October 2013. I woke up one morning with double vision and the room spinning, and no, I hadn’t been drinking the night before. The only way to describe the sensation though, was the feeling you get when you lie down on the bed after a good night out and it’s spinning!

I went to the doctors the next day. My doctor sprung into action, saying he thought I might have had a mini stroke. I got sent to hospital for more tests. I had a CT scan as well as all the blood tests under the sun. I remember walking along the road like I was drunk. It was awful. I must have looked like the local alcoholic.

I usually wear contact lenses, but to help with the double vision I had to wear my glasses and place a prism over my left lens. It looked TERRIBLE and I was so worried I’d end up always having to wear my glasses (something I’d never been keen on).

Before they fit my prism, the only thing that helped the double vision was this patch

After some googling, it was apparent to me that my symptoms were very much like “Labyrinthitis”. I never really got a diagnosis, but I did get my ears syringed and a five week sick note.

(I must just add, having your ears syringed is a lovely sensation and not the slightest bit uncomfortable like it sounds!)

I look so horrendous in this picture because I’d spent about 2 weeks with my head over the toilet. The vertigo made me feel violently sick.

After five weeks off, I went back into work. Everything I’d read about Labyrinthitis suggested that the best thing to do is get on with your life and retrain your brain because it can hang around for months, years even.

At about the six week mark, and just one week into my return to work, I was virtually symptom free. I never got a formal diagnosis and I didn’t need to return for another sick note so that was the end of any medical attention.

14 thoughts on “My MS Story (Part 1)

  1. Ah Joanna I’m so glad you’re doing okay with it although I completely get why you’d feel there’s something beneath the surface with it. I think it’s great you’re sharing this, gives people awareness 😊

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    1. Thanks lovely πŸ™‚ I think invisible illnesses deserve a lot more attention. We’re all acutely aware of mental health issues now, but I really feel that we completely miss that even though someone is happy, it doesn’t mean that they don’t feel physically shit. I’m mostly writing about it because it’s therapeutic though πŸ˜‰ xx

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  2. Jo , we are so proud of you and are always here for you. My grandad had MS but was never able to explainhow he felt. It wasn’t talked about and there wasn’t as much awareness years ago. I knew some of his symptoms but having you explain things of how it has affected you is a real eye opener and I wish he had been able to have done the same. It definitely helps you and others to be able to talk about it , which will have a positive affect on you and others . Sending our love xx

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  3. It’s wonderful how you document the symptoms and how they make you feel, keep your chin up and remember that we are all thinking about you xx

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  4. Wow.. The same symptoms as my mum! She has bouts of dizziness and numbness in her legs and arms-The doctor did a lumbar puncture years ago and it came back inconclusive.. I’m trying to get her to get another opinion.

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    1. I would definitely recommend that. If she’s got lots of symptoms and goes through weird unexplained patches with her health it’s worth pushing it. I’ve been suffering symptoms for 9 years and it was only because I had optic neuritis that I, or any medical practitioner took things seriously xx

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      1. OK. She’s under the care of NHNN in Queens Square London, but they should be doing more for her I think. They claim she has just neuropathy and hence the pain, and weird tingling. She also has a benign brain tumour, which causes fits.. I heard that brain plaques can happen with MS and causes seizures to occur. She’s scared to have the lumbar puncture again, because she was in a lot of pain afterwards.

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      2. I got lucky and never needed one πŸ˜” it was so obvious it was MS once they started looking for it. I’m so sorry she’s not having an easy time of it. They might be right and it might not be MS, but if it is and it’s relapsing she needs to be taking some kind of medication xx

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      3. She’s on two types of morphine. Its not even touching the spinal pain and arthritis either. They gave her Baclofen funny enough,which when I checked; was used for MS spasms.. I think the previous hospitals know something has been wrong for a long time and it has been missed due to some kind of negligence. They even claimed she had “vertigo” at one North London hospital and she still gets episodes of the room spinning even of she’s seated.

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      4. Then there’s the blurred eyesight/temporary blindness,which lasted about 20 minutes each time. And the urinary accidents. That even sent her to a continence clinic.

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