barman 07/01/18
Last reply 6 months ago
Waiting for the axe to fall

Hi there,
I’m new to the site.
I’m waiting for scan results from my neurologist but pretty sure I know what they’re going to show.
Just hoping for some inspiration to get me through the next few weeks.
Some of the stories on here are incredible. I hope I can be as positive.

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nutshell88
6 months ago

Hello barman

Not sure what type of ms or when u were diagnosed. Mri shows effected areas but i 40% lost my faith in this science hehe in 2014 my neuro in Edinburgh got angry at me because she saw an atrophy in mri result well gotta admit thats serious. In 2011 before that prof in NYU hospital new york said i’ll be bed bound by the end of 2011 if i didnt take tysabri because he made me cry from fear i swore to never take a treatment im still keeping my promise thats why neuro in edinburgh got angry.

Im not disabled so hyper active bern to uk 3 yrs altho im saudi and daignosed with ms 7 years before going to uk.

Dont let paragraphs worry you

Oh i did 5 mri’s after i was told i have an atrophy and never bothered looking at them till this year neuro always try to scare me but i dont feel it so i cant be bothered snd i hope your future would be healthy and bright and this mri will be same as the time before.

Be safe
R


vixen
6 months ago

Hello @barman, and welcome. So, everyone on here will identify with what you are going through. It may, or not be MS. There are some crossovers with other conditions. However, without knowing details it’s clear there is something amiss. It may well be when you see the neuro that some more tests are required, such as a lumbar puncture. If it does turn out to be MS its going to be a shock. But, there are many treatments for MS now that simply weren’t here even ten years ago. The medical world is far more highly attuned to the needs and support required for MS folk. If you’re going to do research, stick to the best websites such as (National) MS Society, or a hospital website. Googling almost always causes more trauma than it ought, as does searching for random people posting about their experiences. Shift has been my biggest source of support since my diagnosis one year ago. Since being diagnosed, although he’s, I have a chronic illness, I have made so many changes since that I’m almost gonna say my life has more quality than previously.

You are going to be OK. Your life might not be going in the way you thought, but you must see a change of direction as a challenge which you will find a way to rise to and overcome. Please stay in touch on Shift. And remember that all the stress and worry you put into this won’t change what’s going on in your body, so focus on keeping your thoughts positive x


mermaidia11
6 months ago

Action, distraction, alcohol and music would be my prescription dude

What will be, will be and u will cope regardless. So fretting is a waste of energy that could be better spent walking to pub


barman
6 months ago

Thanks for the replies folks.
@vixen -I try not to get stressed but the huge variability in people’s disease makes for so much uncertainty. I think that is what I find stressful.
@mermaidia11 – I’m a barman, so walking to the pub comes quite naturally to me! Given my experiences with alcohol, I’ll just stick to the action, distraction and music thanks!


novemberrain
6 months ago

Hi! Im in Norwich, well Loddon to be more precise. I hope you get the answers youre looking for. Are you seeing neuro at [email protected]? I have temporal lobe epilespy caused by lesions so see an epilepsy specialist. No other MS symptoms except ON 20 years ago. All the best to you barman.

<<-Dupicate post removed – Admin (Stumbler)->>


amyb
6 months ago

Hi @barman- I completely understand how you must be feeling. The two weeks I waited after being discharged from hospital and being formally diagnosed completely sucked!! I won’t lie. However, what these situations teach us are to live in the moment as much as possible. It’s a real crazy thing to get your ahead but just be kind to yourself. Accept that you are going to feel lots of different emotions and just roll with it. Listen to the music you love, watch the shows you enjoy, take a walk on a sunny day, sit and have coffee and watch the world go by. Just don’t sit around dwelling. Time is precious. Tackle the obstacles as and when they arrive. Arm yourself with information. Believe in yourself 🙂


amyb
6 months ago

Your head around *


nutshell88
6 months ago

Maybe its s bit different for me I wasnt fully aware of what steroids does and all i couldnt even understand english the year i was daignosed age 17 now 30
But i lost my sight at an exam did mri was impressed and annoyed by that machine was visiting hospital daily for two wee
K tablets for a very long time like 4 months or something
when i got my sight back my parents were nervous taking me to many doctors even in egypt they told me its bad eyes sight i believed for 5 yrs because ms never came back and it wasnt actually well known here
My parents and drs said i better notknow about it

I wish i never did in 2010 it was the shock over worried took rebef then boom second relapse hehe
Worrying kills brain cells and waste of heavy breatth

I adapted it its the best thing to dovto leep living


barman
6 months ago

So, got my results today and my consultant tells me my MRI is consistent with MS.
As I’ve not had any major ‘relapses’ since my eye went funny as a teenager, he suspects its probably benign. No treatment suggested at present, but I’m just not sure about this. So many people on here, particularly the non-UK folk, are on DMT. Are we being under treated by a cash-strapped NHS?
Bit of a blow.
Haven’t really discussed any of this with my partner or family yet.
Time to face up to reality 😟


stumbler
6 months ago

@barman , your past “relapse” as a teenager was quite a few years ago (sorry for pointing that out! :wink:)!

So, what lead you back to the Neuro now?

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