Newly diagnosed with rrms

New diagnosis and before diagnosis
1

Hello all I have just recently been diagnosed with rrms. As hard as it is I am trying to get my head around it and believe me there is more down days than good days. Just worry so much about the future and how my life may change. I am seeing the MS nurse next week and my consultant is keen for me to start tecifedra. I am in the future hoping to try for a family. Can anyone relate to this or offer any advice? Much appreciated J xx

2

I feel for you and I am in the same position. I was diagnosed with ms couple of weeks ago but she wasn’t specific to the type. She said not the mildest but not the worst. So far I’m having good days and bad days in the “future thoughts”. Today has been a bad day. As much as family try to help, they don’t understand. They don’t have ms themselves.

i am also booked to see the ms nurse. I read a lot of positive things but it’s hard to just focus on those things and not think the worst.

I have a daughter who is 11. I am 32.

i am sure it is a perfectly fine option for you to start a family. Why not write a list of questions that you have for the ms nurse ?

best wishes to you

3

im not a regular poster on here but did post a few times last year asking advice about issues i was having

but from been around the forum the sad thing about ms is the age group that are diagnosed and with a higher percentage being young females

4

WTF does that mean. It`s bad enough being told you have MS without adding guessing games to it.

Any form of MS is the worst.

She should have said nothing. You need to know what type of MS you have. Not plant seeds in your head.

5

Hello emma. Thank you for your reply. I feel the exact same as you. Everyone i have told have tried to be so positive but I can’t stop worrying. Just can’t see a future just now. Just think the worst is going to happen. Just hope these thoughts pass. I too was also told my mri results were mild and they are hopeful that if treated early I may stay relapse free. Can’t help thinking they are not really sure. Seeing the MS nurse on Friday. Just so overwhelmed by it all. Jxx

6

Hi Littlej

you must stay positive because if not you’ll end up so depressed.

get on a DMD when offered to protect yourself from further damage.

unload your worries onto your ms nurse, they have heard it all before so you won’t be upsetting anyone.

carole x

7

Emmakay says her consultant is keen to start her on Tecfidera so she obviously has Relapsing Remitting MS. She wouldn’t be offered it otherwise. My understanding of the “not the worst” comment is that her MS is active but not, thankfully, aggressively so. As comments from Consultants go I think it’s pretty sensible and realistic in her case.

8

All I can say is, thank god my consultants speak plain English. Emmakay said she is waiting on an official diagnosis of what type of MS she has. Other people have mentioned Tecfidera and that is all.

9

D’oh!!! Got mixed up between Littlej in post 1 who mentioned Tecfidera and Emmakay in post 2 who didn’t. I would like to say that it was just a simple mistake or I had been a bit rushed and careless but I distinctly read the posts more than once and “checked” that Emmakay was being referred for Tecfidera.

10

How are you getting on Littlej ? Take care

11

How are you getting on now Emma? Take care

12

Hi all,

so it’s been almost a year post diagnosis for me. I take tecfidera daily.

Things are not all that bad.

i hope that you are all doing well

13

Hi

my wife has recently been diagnosed with MS. We have our first meeting with a neurologist on Sunday. Could anyone advise types of questions to ask as I want to make sure we are getting all the information we can.

many thanks in advance

14

Hi Brian, I am sorry for your wife’s diagnoses, I hope that you can both get through this initial difficult time together, things will get better. It’s a good idea to ask about the treatments available- criteria is diffferent for different disease modifying drugs. Think about the things that you want to know- what questions do you have, write them down as everyone’s situation is different. Has your wife had a lumbar puncture ? MRI? Ask what if any further investigations will be done ? What type of ms had been diagnosed? There is a lot to take in as it can come as a big shock I hope you get on well and are treated well by the neurologist

15

Hi emma

she had an MRI last week and now we are seeing the consultant to go through everything with us. Apparently if their is a good type to have than she has it. We shall no more on Sunday I guess. Hopefully he will go through all the treatment plans with us.

many thanks

16

Hi

my wife is int he same position as you. Seeing the consultant on Sunday and seeing what he says and what options are available. It’s funny because all the little signs mean nothing but when you put all symptoms together it adds up to MS. So far she has had twitches on the side of her face and other issues but will no more later. I don’t think it is something that changes who you are as you are the same person you have always been I think it is more a change of lifestyle. Anyhow I don’t know as all new to this but I appreciate the comments.