Forum

New Diagnosis trying to get head around things

Ok here goes I got a confirmed diagnosis of RRMS last week and its a huge emotional roller coaster. Last year my husband thought i had a stroke, was seen by stroke team they said i hadn’t had a stroke but was sending me for MRI Scan which was 10 months ago. Early January I saw Neurology consultant who chatted and assessed my history and scan, he want to do a further MRI as he was thinking MS I almost fell off my seat as I was not expecting that at all. Had a 2nd MRI and a lumber puncture was done 3 weeks ago, where the Doctor on the day said it was just to rule things out for sure and maybe it was just a “1 off thing that happened” we left the lumber puncture thinking it was all going to be ok. Got an appointment to see Neurology consultant well that knocked me & my husband 100% side ways, partly because i had convinced myself that it was just a 1 off and that’s why he wanted to see me as soon as to get me off his list, how wrong was I.

We have cried together & i cry and random times during day & night, we had to sit down to tell our teenage children the full story of what is happening, I have yet to tell my parents as they are on holiday, I’ve spoken to my sisters. I’m fine most of the time then it just hits me I’ve got MS what is round the corner nobody knows, but the more we speak the more it all fits together and how its not just been the slurred speech and the mixed up words,its the pins & needles down arms and leg, I could fall asleep as soon as i get down stairs after a good nights sleep, the need to go to the toilet (my daughter is so embarrassed when I do my toilet dance has been know at the till of a supermarket, I’ve had to leave everything and go)

That is about it but the guilt i have started to feel that in the future my husband is going to be lumbered with a lazy wife, my children, if i don’t listen to my body and rest when it needs it will i cut my life short? Do i change my diet, starting exercising more, take supplements and the list goes on. I guess it just take awhile to get your head around it all.

I’m waiting on an appointment with the MS nurses and have said to the kids that they are welcome to come along i want to be as open with them as possible. I’m hoping that once i speak with the nurses i might start feeling better about myself again. Thank you for reading my moaning and you all take care.

I’m slightly behind you in the process but feeling the same way. Had optic neuritis last October, MRI in dec-lesions-so neuro appointment who is pretty confident its Ms. Got MRI with contrast and lumbar puncture tomorrow so will no doubt have a diagnosis very soon. It doesn’t feel real.

The lumber puncture will be fine you will have to stay laying down for about a hour after. Make sure you have a lot of full strength coke acola with caffeine in and a straw, if you can stay in bed for about two days drinking cola and caffeinated drinks. Hopefully you will not get the headache, but if you do lay back down and it may go again.

They will give you a leaflet to tell you what to do.

MRI its noisy. Some people here have fallen asleep in the MRI I just closed my eyes and did what they asked. Good luck.

Kay

Thanks Kay!

Hello

It doesn’t sound like moaning at all. A diagnosis of MS, especially so unexpected it hits you like a brick to the head, is something that takes time and a maelstrom of emotions to wrap your head round.

You have a million questions to ask the MS nurse, I suggest you write them down so you can make sure you get some answers. You could ask your children to write down their fears and worries too, that way you can all be open and honest about what’s happening to your whole family.

One thing that is generally true is that MS is not a killer. Yes, it could shorten your life slightly, but most people die with MS, not of MS.

You might want to ask the MS if s/he knows which type of MS you’ve been diagnosed with (unless you already know). Basically there are two main variants. Relapsing remitting (RRMS) which is characterised by periods of relapses (sometimes called ‘flares’, or attacks). These relapses are generally followed by remission, either partial or complete. So you could have a relapse that lasts weeks or months, then completely get over the symptoms, or have some residual damage. This variant can sometimes develop into a progressive type, either with continued relapses or without, but disability is likely to progress regardless. The other distinct type is known as Primary Progressive MS (or PPMS). With this variant, there generally aren’t relapses, disability will either slowly, or sometimes more quickly, progress.

If you have RRMS, there are disease modifying drugs (DMDs) which aim to reduce the number and severity of relapses. You should discuss these with your MS nurse. There are numerous types, their effectiveness is balanced against the potential of side effects.

Don’t feel that now you have been diagnosed, your life is over. The chances are you will have the RR variant (about 85% of people with MS do). It’s likely that you will get on a decent DMD and gradually you’ll develop a ‘new normal’ way of living, that takes account of your MS, but it doesn’t have to completely define your life or that of your family.

Best of luck.

Sue

1 Like

Hi All

Ok, so today I had my screen test (!) for ocrelizumab today - quite a list of blood tests and a chest x ray

so, assuming I pass all

my first is on the 7 aug followed by the second on 21 Aug

Was told lots today, most of what I forgot ( foggy Brain )

The will monitor my blood pressure and hert rate every 15 mins initally

Will let you know how it goes

wish me luck

R

Good luck x

Still all go for the drugs…

Hoping side effects not too bad …

eyes are still a problem, but did go the opticians and he seems to think I have Glaucoma now ( just to cheer me up ) but he said he can’t be sure so he is referring me to a specialist ( I’m collecting them ! )

I managed the City 5k run in 26 mins - looking down the whole time !

Well done in running the 5k

Hi everyone new to this have juat been diagnosed with ms a few weeks back still getting my head around it. Waiting dor appointment at addenbrokes hospital only to get a letter saying im on a waiting list of june 2020!? Really feel left in the dark been diagnosed with no information or what to do. Perhaps i will contact the hospital.

blimey Shell

that’s nearly a year to your next appointment.

i’d contact the neuros secretary and ask if there are any cancellations could yours be brought forward.

take it easy.

spend the waiting time identifying stress triggers and cutting them out.

teach yourself how to relax.

mindfulness meditation has been a huge help to me.

carole x

I have contacted they said it was a mistake and will get me an appointment soon as they can. Thank you for the advice i have noticed my symptoms get worse with the heat, right eye loses vision and legs can feel very heavy like a big effort to walk as well feeling so tired all of a sudden. Will look into meditation. Thanks!

Hello Shell

That waiting time is truly unacceptable. It’s widely acknowledged that starting on a disease modifying drug (DMD) as soon as possible after diagnosis is the best plan. You want to avoid possible relapses as much as possible. The only person able to prescribe a DMD is a neurologist.

As Carole said, get hold of your neurologists secretary, ask for a sooner appointment. If you have no luck, try contacting the hospitals Patient Advice and Liaison Service (PALS). Their contact details will be on the hospital website.

You should also have the contact details of an MS nurse. Ask the neuros secretary for that too. A good MS nurse fighting your corner is what you need and deserve.

Meanwhile, use this forum for information, help and moral support. You can find info on the tab labelled About MS. And we will help with support, understanding and such experience as we have.

Sue

It really Pi**es me off that we ( as patients ) have to do all the chasing and running around , My eyes are still a problem and I have seen my optician to have my optic nerve checked and he said there is a problem there…and that’s it ! If I had not bugged and bugged - I’d still be waiting for a follow up ( Going to morefields wednesday ) Optician not sure if I have Glaucoma or MS Symptoms ! I really feel for you - when I had the first relapse - I did feel quite alone, and quite panicky…I had to give myself a good talking too…and that helped. I managed to get a good MS Nurse and now Im starting the DMD by drip next week ( assuming I get there - Germ free ) I do agree …start the DMD ASAP - I was worried about the side effects first, then decided best to cost down the relapses , as they are more unpleasant … I did try Yoga ( from a teacher who also had MS ) but found that exercise ( Running ) helped me Not sure if I have helped you much… But this forum is a good place to put down thoughts… All the best, and be a nuisance Ray

Thanks for all the advice. Anyone got any tips how to handle the tiredness?

Yikes! I knew Addenbrookes have long waiting lists but that is one heck of a wait! Glad you called to check though and it was an error. X

one week to go for the first infusion ofocrelizumab ! has anyone here had it ?

Finally got a phone call today from nuro nurse i havent got to wait a year that was a mistake but will get an appointment in 2 3 months. Did explain they diagnosed me with ms no info on it sent me on my way she did apologise. Better then a years wait but what do i do till then carry on til i get treatment i guess. Im taking it heat just makes your symptoms worse!? Fatigue at mo is at its worse at the moment trying my best to keep active when my legs arent playing up.

Hi i also have optical nuritis have they prescribed you anything for it and if so has it helped improve it?

Hi All

I had my first infusion of Ocrevus today

all went well, I was very nervous, but great nurses and other fellow MS paitents chatted and put me at ease ( Lovely people )

The nurse said it’s a great drug

She thought I would do well

Ok at the moment - slightly heavy legs but I assume thats tiredness

all the best

Ray