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Think I've just been diagnosed???

  • Hi all my name is gaz

It all started for me 2003 no feeling in my left foot and pins and needles in my hands I saw the doctor he didn’t have a clue about a week later i lost all strength all over my body so went to a&e and they admitted straight away had bloods and lumber puncher done no joy had MRI done found scar on my brain stem but still no diagnosis test after test then given steroids on a drip and started to get my strength back within a couple of days. I was in hospital for about 3weeks . i had follow up mri scans over the years and no change. 2016 I developed blurred vision in my eye confirmed as optic nerve damage. Nothing he could do. Then this week had my review with my neorolgergist he said it was a second attack of ms. I said so it’s ms then he said yes and has revered me to the specialist. What will happen next ? why as it taken so long to diagnose me. Also I developed bladed problems 4 years ago so why wasn’t this linked to my ilness as all my simptons had never gone away.

hi gaz

you will see an ms specialist neuro and should be allocated an ms nurse.

probably will be RRMS and offered a DMD.

do you mean you developed bladder problems?

if so you need to be seen at a bladder and bowel clinic.

you can refer yourself. google to find your nearest one.

it does take a long time for many people to get a diagnosis.

i was lucky because apparently i had lots of old lesions and was mid relapse when i went for my scan.

don’t get upset because there are far worse things to have.

avoid stress at all costs.

good luck

carole x

Hi Gaz

What a bugger. So they probably thought it was a one off (CIS or clinically isolated syndrome), or hoped it was. Your bladder problems could have been related and led to a diagnosis, but generally they want to see brain lesions isolated in time and space. So you can be diagnosed with only one lesion, or with only one attack or relapse, but sometimes the neuros want to err on the side of ‘do nothingness’!!

So now you’ve been officially diagnosed, I assume it’ll be called relapsing remitting MS as you’ve had periods where symptoms have either partially or completely remitted.

The specialist to whom you’ve been referred is a assume an MS specialist. S/he should get you started on a disease modifying drug (DMD). For more info and help with deciding which DMD you should be offered and which you should opt for given the choice, have a look at: https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid

Best of luck with it. I know it seems like a bloody scary thing to be diagnosed with, but given a good DMD, some physio advice, the assistance of an MS nurse and a decent prevailing wind, you should be able to keep reasonably fit and well.

Sue

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Thank you for the reply yes I saw the bladder specialist had the camera sent down never again he put it down to an overactive bladder sent home with meds that didn’t work so haved just lived with it.

Thanks sue for your reply

get back to the bowel and bladder clinic and tell them that the meds didn’t work.

i tried 4 different ones until i found one that worked for me.

don’t give up because once you get the help you need it’s like getting a bit of normality back.

Hi I phone my nerolergist secirtery this morn to ask about dvla if I need to inform then she said it’s not in my notes about ms it just says second attack demilelating diesaese does this mean ms or not I’m confused?

hi gaz

that is bloody ridiculous.

get your gp to find out on your behalf.

i was of the understanding that more then one episode means multiple sclerosis.

good luck

carole x

Hi yea phoned docs to ask it just says second attack demilateing is this ms or not. It’s making me feel like s…t not knowing

hi gaz

i’m not a neuro but to me this seems like it is ms.

i take it that you haven’t seen the specialist yet?

why not contact his secretary and ask why not?

or ask your gp to do that for you.

carole x

Carole I’m waiting for an appointment with specialist. I fort my neurologist was the specialist it turns out I need to see the neurologist who specicalises in ms. How many specialist will I need to see before I find out if I have ms. I can’t believe my neurologist said to me it was ms if he’s not sure enough to put it in my notes instead of demilenation diesese.

hi gaz

the job of neurologist covers such a wide range of illnesses.

each neuro has a specialism in one of them.

so now you have shown signs of ms it is right for you to be passed to an ms specialist neuro.

probably won’t have too many ms specialists but maybe specialists in other areas (eg bladder).

have patience gaz, it will pass soon enough.

carole x

After not receiving my appointment last week I rang to chase it up they said they had not received my referral OMG so phoned my neros secritry she said she would email them again. They phoned me this morning with an appointment for Tuesday 14th thank god let’s hope I get some answers. 2 Attacks one lesion on brain stem optic norits permanent pins and neadels etc it’s got to be MS. Just need to know so hopefully start some meditation.

good luck gaz.

there’s a faulty cog in that machine they call your hospital!

glad you don’t have to wait long.

carole x

Yea not long to wait thank god

The waiting is the hardest thing by far ! each test there is that awful wait after for results, each appt there is a large gap before the next, it plays with your mind, i hope you get the answers at your next appt and know for sure, nobody wants ms but i can imagine at the min you just want the answers and the right treatment, good luck Gaz :slight_smile:

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Hope so thanks sue

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Hi Gaz.

I hope you get the answers you want from your next appointment. Keep us posted, Good Luck. x

Hi all I just got my appointment letter. I was refered to see Dr Garcia but my letter says I will see a member of Garcias team. I was hopeing to get a firm diagnosis from him if I’ve got MS or not will a member of his team be able to diagnose me or not I’m confused???

Phoned hospital today they said it’s normal to say member of team in the appointment letter. feel better now