Urgent Help!!!

New diagnosis and before diagnosis
1

Hello everyone

I am new to this site and looking for some help. This is my story of the last week. Basically I woke up with tingling hands and arms Friday. Then Sunday it progressed and I had tingling in my legs and feet. Monday I had a extremely severe pain behind my left eye. Went to the hospital were I work. The did bloods and a Neurological examination. They stated I needed an MRI with contrast to rule out MS because of my age (I’m 34) and I’m female (apparently it’s more common in females) but the doctor was more concerned about the pain behind my left eye and wanted to rule out optical neuritis. Saw the eye doctor who said my vision was fine and he couldn’t see any inflammation behind my eye to suggest optical neuritis but he said two thirds of the time they can’t see anyway. He told me to come back in two weeks with the results of my MRI.

Wednesday woke up to tingling tongue and pain all in my thighs. To cut a long story short GP sent me back to A&E.

A&E Did a CT scan to check for bleeds and clots that was clear. Got admitted into hospital. Every doctor I’ve seen said we need to rule out MS as you can imagined, at this point I’m extremely frightened and worried. They also wanted a lumber puncture.

Had lumber puncture done Thursday and MRI last night.

Anyway, last night I had my family visiting and an Orthopaedic doctor came to see me because I’ve got something wrong with my finger (completely unrelated it’s an infection) and my Mum said to her well she’s awaiting the results of her lumber puncture and MRI yet and the Orthopaedic doctor states oh it’s back! So I said well are the results clear??? And she said well is showing signs of slight demyelination. But I’m not qualified and then she scurried out of the curtains! So then after 4 days of worrying I thought right well that’s it if got MS! So I cried and cried.

Mum went and got someone and said a doctor has just been to see her and told her there is something on her scan but then left and didn’t explain properly what’s going on! Another doctor came to see us apologised and said my scan is saying there are some changes on my MRI scan but ‘there is little evidence to suggest demyelination’.

She said she’s really sorry about that orthopaedic doctor but she shouldn’t be telling information off people’s scans. They said she’s READ IT wrong!

I’m in a whirlwind at the moment. I’m still having symptoms and I still don’t know what’s going on until I see the consultant this morning.

2

Oh poor you Sami.

I hope you’ve now seen a neurologist and been told officially the correct information about the MRI.

And hopefully it’s not MS, nor anything else to be too worried about.

What a bloody horrible thing, to be told wrong information by someone unqualified.

Basically the only person who can tell you whether it is or isn’t MS is a neurologist.

One good thing is that you don’t have optic neuritis. That’s a very common first, or early symptom of MS. And your doctors do seem to be testing you very thoroughly. So whatever the result is, it sounds like you’ll be able to rely on it being correct.

Let us know what the result is.

Sue

3

Thanks.for replying Sue. I’ve literally been out of my mind. They had to give me something to sleep.

The consultant saw me today and said the scan states there is little evidence of demylenation and the MRI is not conclusive of MS. They said my symptoms are not consistent either. I keep getting tingling at different place in my body quite quickly, for example in my bum then hands then mouth then feet etc.

The scan showed no optical neuritis and an ophthalmologist dilated my eyes the other day and said my vision was fantastic.

What a week it’s been horrendous the symptoms the not knowing all the invasive tests.

Thank you.

4

i wasnt diagnosed with scans for ON but 2 VEP tests which showed bilateral slowing of the brain to the optic nerve left worse then right.

it could be you have something else going on, have you been checked for diabetes for example…i.e. problem with finger, b12 and other issues. also the more you stress the more symptoms get worse.

so basically the scans are showing not MS not conclusive. I would just go enjoy xmas if it is MS it will eventually show itself in more detail. Hun it took me 10 years to be diagnosed my first symtpom back in 2000 with blindness which was ignored by my useless GP, then finally 2006 i couldn’t get out of bed, and 10 years later diagnosed.

so its a long haul. it could be even your pre menopausal yep my daughter started your age lol.

go enjoy xmas, i am really sorry you went through this awful experience but at least you got seen, i was ignored sadly my age at the time i believe strongly.

MERRY XMAS. its a horrible road but hopefully you have something which will just sort itself out. xxxxxxxxxxxx