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Lost and fed up

I’m just so bloody scared and fed up.

Here is the backgroun. I went to the GP (a locum) to check a UTI had cleared up and mentioned the funny feeling under my eye and mild headaches (had vision problems 18 months ago and ophthalmologist said that there was “possibly a bit of old inflammation but nothing to treat or worry about” so I didn’t) . Within an hour she had me in the local hospital Medical Assessment Unit, where I was prodded and poked all day and a clear CT scan. From there I was admitted as this was “the fastest way to get an MRI”. MRI day 2 and by 7pm still no results so I went home (I know I shouldn’t have but nobody had talked to me properly about what was going on and this was 2 days before school went back and I was changing teaching stage and classrooms and had planned to be in school all this week.

I got a phone call on Wed at 12 (this all started Monday) from the junior dr in charge of the ward to say MRI was not clear but she wouldn’t tell me what it was and to go to my GP. He was as always amazing when I saw him at 4pm- had obtained my results, and properly went through all the possibilities and he referred me to the neurologist. Needless to say I still had nothing organised for school. Thankfully I work with the best team you could ever hope to meet. My 2 closest friends knew what the score was, and I chose to tell the head and depute head at this stage and they have also been so so supportive.

I saw the neurologist 4 weeks later and got the “probable ms” diagnosis (he went over my MRI with me in detail) , and more tests needed. He went back over recent illness - and the Bell’s Palsy 5 years ago that was put down to a form of shingles, the exhaustion and bladder issues that contributed to a hysterectomy (not that I’m complaining since that was probably still very much needed) and the eye incident could all have been possible relapses. I have told my closest work colleagues as some days I am just a bit staggery, definitely forgetful and leaving at 3pm daily and taking work home (I need a nap first). I am not ashamed of how I am, and don’t feel the need to keep it secret but I have kept it in school and close family.

So fast forward to Christmas week - All I have at the moment is “probable MS” and as lumbar puncture (26 Oct) since was inconclusive (not clear) I’ve had a second MRI with and without contrast at end Nov. Neurologist appointment 31st December. Since start of November I have kept a diary, but any symptoms seem mildish (balance, blurred vision, stiffness and pain in hip and thigh, oh yeah and fatigue, you know the kind, where you are so tired even your hair hurts).

I am very much a positive and get-up-an-go person naturally so this has taken the wind out my sails, I know there are so many people so much worse off than me and I don’t want to feel as though I am complaining so I am always fine when people ask. I just don’t know what to think, do or say anymore.

I just hope that I get a definite diagnosis or a definitely not - the probable is difficult to explain to family…

Sorry to offload, but I figured this was the place to do it, the tears are now blinding me and I don’t even know where they came from…

Seona

Ah Seona, I do identify with your fears and worries.

But I am happy to see that you are getting tests and listened to by the docs.

It is a kind of lost feeling, when we are awaiting a diagnosis.

Ive spent years feeling like that, as I was wrongly diagnosed with PPMS. I have a similarly incurable condition, but it isnt terminal, thank heavens.

After retiring on ill health grounds, at 47, I am now 63 and still me, but not the old me.

Give yourself time to adjust, accept and move on.

Life may change but, with good support we find a way to cope darlin.

luv pollxx

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Hi Seona,

You replied to my message which I posted anonymously ‘scared and confused’, and on seeing your post, I felt compelled to reply.

I can’t help, as I’m at the very start of all the ‘what’s this all about’. But know exactly how you feel.

Sometimes you need to offload and it helps when the people are strangers. It’s also the worst time of year - everyone is supposed to be happy and chirpy and how the bloody hell can you be with this hanging over you?!

You’ve not got long to wait till your neuro appointment- make a list of all the questions you want to ask - in both possible outcomes and in the meantime, do whatever helps - offloading on here, long soak in the bath to have a secret cry (& glass of wine!).

I hope it all works out for you.

Best wishes,

Jane

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