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Hi There

Hello everyone,

4 weeks ago I woke up and had hundreds of tiny dots in my vision, like when you rub your eyes. I’ve had them before but they always went away after a while, this time they didn’t go away. It gradually got worse over the next 3 weeks including double vision in my right eye, flashing lights and a patch in my right eye where I couldn’t see anything, After about a week I started getting headaches, probably from trying to see through my dodgy eyes.

The eye clinic said there was nothing wrong with my eyes and sent me to neurology. Neurology said it could be a migraine and gave me some migraine tablets and told me to come back if they didn’t help. They didn’t work so I went back to my gp for a referal and spent 2 weeks trying 4 different migrane tablets until I started getting pins and needle type sensations in my legs and head.

The gp sent me for an mri (I managed to get in the next day due to a cancellation) a week later I got a phone call from a consultant at the hospital asking me to come in for my results. She told me my mri showed signs of ms so they were going to do a lumbar puncture and start me on a steroid drip. after about 8 hours in and out of the waiting room the dr told me my spinal fluid had a bug in it and I had to stay the night for antibiotics.

I spent 4 days in the hospital being told that I had meningitis then that it wasn’t meningitis, then they hadn’t found an infection they found a high white blood cell count, I was on antibiotics then anti viral meds eventually they let me go home with anti viral tablets telling me it was meningitis.I got a letter on Tuesday with an appointment Today with the neurologist.

Today my neurologist told me I most likely have ms. He showed me my mri and pointed out the little white dots that shouldn’t be there, he said that the evidence of infection was most likely a cold that was about to hit. He says he has to wait for my lumbar puncture results which will probably be another 4 weeks. It is in its very early stages and they have to wait for my lumbar puncture results before they start me on steroids.

I just wanted to say hello and share my story.

Hello

Hello !!!

Hi Trixie.

Nice to meet you. Hospital didn’t sound fun at all.

Paula

hi trixie

what a horrid time you had in hospital.

being told you have meningitis! you couldn’t really make it up!

what a 4 weeks you have had.

at least it hasn’t been a long drawn out diagnosis.

got to hand it to you - you don’t hang about!

be kind to yourself because it will all hit you once you begin to absorb it all.

keep coming here for support

carole xx

Hi Trixie.

Hugs to you. What a terrible uncertain time for you. I feel for you. I have experience with meningitis with my mum. It was a time of a lot of uncertainty. She was incredibly unwell and well passed away but I think her circumstances were really rare. So it to be caught between the two MS/meningitis must be worrying. In all likelihood they have treated you for meningitis as precaution as it has to be addressed first if suspected. So now you are in the hands of neurologist you can hopefully move forward from that.

Wishing you peace of mind and health and feel free to chat a bit more here, let us know how you are getting on.

Take care.

x

Thanks for the warm welcome everyone.

CatwomanCarole58- I work in the hospital so I was able to pester :slight_smile:

Trueman- I’m sorry about your mum :frowning:

The whole thing just makes me wonder if I have had symptoms before. About 3 years ago my leg went numb from my foot to my waist over a week or two, the dr told me it was probably a trapped nerve. About a year an a half ago I started to tingle in my back when I put my head down, it eventually spread down both my legs and into my right arm, I didn’t see a dr for it because I figured it was a trapped nerve again. I have had a little more of that which is why the dr sent me for an mri.

Crumbs, what a horrid time you have had1 You must be feeling pretty bruised and exhausted by the whole business. I do hope that the pace settles down from now and that you are on the way to some clarity about what is amiss.

I see from a later post that you are mindful of earlier problems that might have some bearing on things. I expect your doctors are aware of all this. If they aren’t, they would probably want to know - that sort of information can be useful to them and help them to narrow things down a bit.

Good luck with it all.

Alison

I’m writing a list of questions for my neurologist next time I see him and keeping a diary of anything that could be caused by the ms. Just having an almost official diagnosis has helped me feel much better.

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Hi there.

A small piece of advice, if you’re not doing it already, keep a diary/log of all the episodes - duration, symptoms, dates etc. It’s really useful to refer back to when you see specialists, My symptoms probably started about 10 years before I finally got diagnosed. They now all make sense!

Take care.

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Sorry now read this post! You’re doing it already.

I got the idea from another post I saw on here, probably one of yours

Looking back a lot of early symptoms I generally ignored as they were fairly “minor”; fatigue, tinnitus, pins/needles. Finally getting a diagnosis after so many years actually made life easier! I thought I was going crazy with all sort of random health issues that I felt a bit stupid going to see my GP about.

I’ve just started a diary & finding it really hard to decide what needs to go in it. I don’t know what is ‘normal’ and what are symptoms. I’ve had a chat with my hubby about vibrating eyes when you’re really tired, and apparently that one isn’t normal!

You mentioned tinnitus Richard. I’ve had tinnitus since my early 20s (a couple of decades ago now!). Can that be a symptom of nerve damage? My gp at the time told me I had been to too many loud gigs and that had caused it. I accepted it, although I didn’t go to that many gigs, and wasn’t into heavy metal or anything. My gp never referred me on to anyone & I’ve never bothered mentioning it to another doctor (he’d made me feel like I was wasting his time with it).

Paula

It can be a symptom of MS; but then can so many other things! When I was getting it in my early 20s I never ever associated it with MS. Its looking back now that I’m able to understand that the vast majority of all my minor health issues were infact all related to MS.

Richard.

Thanks Richard. Might put some historical stuff in dairy then too.

Hiya Trixie Pix,

The bending your head and shocks along your spine is something called L’Hermittes; see L'Hermitte's sign - multiple sclerosis encyclopaedia

Your floaters seem a classic case of Optic Neuritis; see optic neuritis - multiple sclerosis encyclopaedia

Neurology is not a well known science and symptoms are similar with many complaints; ask questions; always ask why? Like your headaches; yes MS does cause headaches but they are far worse with a complaint called Hughes Syndrome otherwise symptoms mimic MS. See http://www.hughes-syndrome.org/

Good luck

George

They took about a pint of blood from me for testing whilst I was in the hospital but I will definitely ask my neurologist if any of it was tested for Hughes Syndrome.

Today I have had nerve pains in my arm between my elbow and wrist like sensitive teeth, I get it in my knees quite often because of my hyper mobility but never in my arms before.