Hi 
Newly diagnosed and although have been given a whole host of info by the specialists still feel very lost & emotionally raw! Is there anyone who can empathise with this & offer any words of wisdom?
Thank u
Sammy
Afraid weāve all been there so can all empathise. I was diagnosed in January after 3rd relapse and am now on DMDs. Each hospital appointment made it more real. This forum really helps, weāre all different with different symptoms, abilities, experiences. I felt at first it was the end of my life but now realise life goes on just down a different route to that planned. You may need to adapt your life to avoid fatigue or relapses which for me means more resting, less running about like a mad thing (old life). Weāre here for each other, lots of support and a helpline if you need someone to talk it through with Kath X
Hello Sammy, a big welcome from me too hunnny!
Give yourself time to ingest all the info, diagnosis etc.
It is a huuuuge thing to be told you have an incurable conditionā¦
BUT
with good support from family and friends, understanding and patient doctors, plus accepting help whenever it is offered, you`ll find your way and learn how to pace yourself.
Have you been told which type of MS you have? There may be drugs to help slow down the rate of attacks etc.
Remember that although thousands of people have MS, every person follows a different path. What happens to others may never happen to you. Dont listen to well meaning people who say things like, Oh my cousin has MS ad he is so and so, youll be fine, or youll be worse.
There is a life after a diagnosis of MSā¦honestlyā¦a worthwhile one.
luv Pollyxx
Hi Polly
thank u for your reply !
Yes Iāve been told its RRMS Ive started copaxone which to be honest stings like a bitch 
I also have fibromyalgia and whilst Iām struggling with a lot of symptoms, fatigue is the worst, I feel like a completely different person, Iāve always been so active and now the simplest things wipe me out! There doesnt seem to be anything I actually can do and enjoy doing !!! I work part time and Iām really really struggling to keep this up ā¦very worried about the future
xxx
Hi Polly
thank u for your reply !
Yes Iāve been told its RRMS Ive started copaxone which to be honest stings like a bitch
I also have fibromyalgia and whilst Iām struggling with a lot of symptoms, fatigue is the worst, I feel like a completely different person, Iāve always been so active and now the simplest things wipe me out! There doesnt seem to be anything I actually can do and enjoy doing !!! I work part time and Iām really really struggling to keep this up ā¦very worried about the future
xxx
Hi Kath
Thank you for your reply too
Yes I agree
I hear a lot from people who all have different experiences
I know that no too people are the same, itās a very unpredictable disease and i think thatās maybe why its so scary for people???
How do you manage??
Kind regards
Sammy x
Hi agan. Sorry the dmds are hurtingā¦why not ask MS nurse if there is any way to make them easier?
I worked full time , but had to finish quite soon after onset of problems. The fatigue was terrible.
Is there anyway your employers could help?
Are you getting PIP? You can get it whist working.
pollx
hi sammy
commiserations on your diagnosis but like others have said ālife goes onā.
fatigue has been my worse symptom, pain i have meds for but the blasted fatigue gets in the way of me doing anything.
i have learned to pace myself (mostly but still overdo it at times)
i find that having things to look forward to helps keep my spirits up.
iām lucky to have some great friends to go places with.
youāll probably be bombarded with more specialists, some of whom iām still very grateful for after 5 years.
occupational therapist really helped me because i blacked out after having a bath.
she said i should have showers instead and arranged for rails in my shower and lots of other useful bits and bobs
you should be allocated a ms nurse too.
take it as slowly as you need to
and remember the mantra āand breatheā
carole xx
Hi Carole
yes i have an ms nurse, i have only seen her once and was so overwhelmed I didnt ask any questions!
I am slowly learning (very early on) some hard lessons such as heat makes me worse and I cannot do any of the things I used to do itās quite hard not to get down about it all if Iām honest
My line manager knows and she has told me that she is letting me take the lead in respect of letting her know if I need anything which sounds great in theory but I havent actually tested this theory out yet! I work in a very high pressured environment and I know for a fact this is not helping I have only worked for this company for 5 months so Iām really not wanting to upset the applecart so to speak but my health comes first and Iām not really going to get any better until I accept I cannot do everything I used to ! Also I worry about the financial side of thisā¦
How are you doing??
Hi Poll
I have another app to see the ms nurse in a month, I think one of the problems is im just not used to it! Iām learning that certain IX sites (thigh) are very painful, Iām really thin so donāt have much fat there! Iāve bought an ice pack which seems to help take the sweeling downā¦
Whats the PIP you mentioned???
I was wondering if I should approach my employer and ask if I can have a few less hours altough obviously this leads to financial implications but Iād rather do that than crash and burn and not be able to work at allā¦
has anyone tried any vitamins / sup[plements with any success? Also I read a gluten free diet can help???
thanks guys xxx
Hi Sammy Sorry to hear of your diagnosis, but glad youāve found the Forum. I was diagnosed just over a year ago and can empathise with the huge emotional turmoil it causes. āRollercoasterā doesnāt even start to describe my ms journey to date, but Iāve learnt some wise lessons on the way and been helped by members of the Forum. There are plenty of people who take supplements on here - if you do a search there will be previous threads with lots of advice. I take vit D, B12, omega 3 fish oil & calcium. Iāve cut down on dairy, red meat & saturated fats but donāt beat myself up if I eat them. Iāve done this mainly because it makes feel like Iām taking control of something, as when I was first diagnosed I felt so powerless and scared. I also exercise more regularly now, and that has made a great contribution to my feeling of wellbeing. I think that a chat with your boss sounds a good idea- you never know; she may come up with some good suggestions herself. Either way, it lets her know what youāre having to cope with. Best wishes Jane xx
Hi
Hi Sammy, PIP is the new name for disability benefit.
Hi, I was diagnosed in January and have just started taking Copaxone too. Ouch!!! Particularly on my thighs like you. Iāve got to do my thighs again from tomorrow and I still have the lumps and bruises from last time I thought I was coping ok with my diagnosis now after an initial meltdown in September/October when I was diagnosed with CIS, but I realise that I am not coping with acceptance of the fatigue and all the things I canāt get done in a day now (weekends more really as I have just returned to work after 6 months off). Mindfulness meditation really helped me at first when I was in a lot of pain, but I am finding it harder to concentrate now I am doing more. I am going to go part time soon once I have used up my holiday as I just couldnāt work all day anymore (I find it easy to accept this one as I donāt like working lol). Iām just ignoring the financial implications.
Oh and I do a similar diet/supplement thing to Harlequin Rose. I couldnāt have put it better myself
[quote=sammyb11973]
Hi Carole
yes i have an ms nurse, i have only seen her once and was so overwhelmed I didnt ask any questions!
I am slowly learning (very early on) some hard lessons such as heat makes me worse and I cannot do any of the things I used to do itās quite hard not to get down about it all if Iām honest
My line manager knows and she has told me that she is letting me take the lead in respect of letting her know if I need anything which sounds great in theory but I havent actually tested this theory out yet! I work in a very high pressured environment and I know for a fact this is not helping I have only worked for this company for 5 months so Iām really not wanting to upset the applecart so to speak but my health comes first and Iām not really going to get any better until I accept I cannot do everything I used to ! Also I worry about the financial side of thisā¦
How are you doing??
hi sammy
iām ok at the moment. my usual responses go from absolutey fabulous to crock of c**p !!
however iām mostly fine.
access to work look at your working environment and your daily tasks and help put in place anything that could make it easier for you to continue working.
try not to dwell on the financial worries because iām a great believer in the evils of stress.
learn to be kind to yourself
it will sort of all fall into place but it needs time.
carole x
Hi Sammy
Welcome to this fab site.
I was diagnosed 10 years ago. Iāve made loads of friends on here since then and I am sure you will too.
I remember it was a shock at the beginning to be told I had MS but as the years have gone by I have found ways to control the symptoms as best I can. The most important thing for me is not to overdo things. As soon as I do the symptoms elevate. Also try to keep away from stressful situations as stress is a major part if staying as well as we can.
Number 1 tip take care of yourself and listen to your body as it will tell you when it needs to rest.
Looking forward to chatting with you.
Shazzie xx
Hi Shazzie Thank u for yr mssge. It gives me hope to hear ppl hav had this for so long but hav it under control. It sounds blissful! I hope I can get to that point bcos atm everything seems very hard and confusing Ru on Facebook ? I canāt always log on from my phone ! Itās b great to find out more !!! Thank u ! Sammy xxx