Forum

new to this and scared

Hi everybody,

This my first post and really need your help.

I was diagnosed in Oct 2012, thought that I would be ok cos “had a name for it now”.

The news has hit me hard now, I feel so alone and frightened of the future. I am not on any meds, I was on Amantadine for a while but thats all. I’ve been offered anti depressants but dont really want to go down that road if I can help it, I suffered badly with depression when I was in my early 20’s and took pills for years it was difficult to come off them so would rather give them a miss for now.

I don’t want to be the biggest downer in the room or anything but it all seems so bleak. I haven’t ever met anyone with ms yet everyone I know seems to work with someone whos got it or there friends sisters cousins mother has and is fine. Everyones an expert but if I randomly fall over they are stunned.

I have a supportive partner but I feel completely alone. No matter what I’m doing its always there in the back of my mind, and I feel so vunerable.

Is this a normal response to the news? Any tips?

Thank you in advance for any advice, sorry to be so doomy.

Becky x

Hi Becky,

Don’t feel alone. We all have it on here amnd there are some really lovely and supportive people here who are always willinfg to give you some advice or just a big hug. So here’s a big hug to begin with.

I was diagnosed in October last year too. It is very frightening. I really knew I had it about a year ago when I had a really bad relapse.

I think that you need to get onto a treatment as soon as you can. I tried Rebif but it did not agree with me and I am seeing my neurologist at the end of May to discuss options. I will probably try Copaxone or there are some trials that I am quite interested in. I may have a go at one of those.

There is lots you can do yourself too. I think diet is very important and supplementation too. I take vit B12 (500mcg), vit D3 (5000 iu), Magnesium (400 mcg), Omega3 (1g) and a probiotic. I think that this makes me feel a lot better. I also try to avoid wheat, dairy and sugar as I get quite bad IBS. Especially with the wheat. I have mild depression. I use St John’s Wort for this. It seems to really help. I use HRI. Really good. I also use meditation, Mindfulness in particular. Really good also.

It is good that you have a supportive partner. I personally am trying to get onto the right medication, so that I feel that I am on a level playing field and then I can move forward from there and get on with my life.

Hope that this helps.

Adrian x

Oh btw, I was just reading this. Quite interesting.

http://www.drmyhill.co.uk/wiki/Multiple_sclerosis_-_the_environmental_approach_to_treating

Hi becky, it is quite understandable that you are feeling like you are. Being diqgnosed with something as big as MS would scare anyone…so you are certainly not alone in that hun.

I dont have MS, but i was misdaignosed with it for years…of the PP variety.

I have a condition which is similar to PPMS.

My mobility waned very quickly and i`ve been a full time wheelie for 9 years now. Dont let that worry you, as many MSers never need to use a wheelchair.

With regards to meds…a lot of that depends on which type of MS you have. There are some good drugs, but they dont suit everyone with MS.

Sounds like you need to speak to someone about this. Have you got an MS nurse?

Have you got a follow up appointment with your neuro?

Some drugs which help me are baclofen for spasms and stiffness and amitriptyline for nerve pain.

Having a supportive partner is so helpful.

Keep talking to us and we`ll try to support you as much as we can.

luv Pollx

Hi Adrian,

Thank You for the quick reply, I saw my neurologist this week and said hes pleased with my progress. Doesnt feel I need any meds apart from the anti depressants. I am taking Vit d and omegas on his advice. I cant take the St Johns wort cos on the contrceptive pill and it interferes with it apparently.

I honestly don’t know how long I’ve had ms, the more I think back over the last few years the more symtoms I can remember and didn’t do anything about it. Wish I had pushed my GP more now.

Believe it or not last April I went to see her telling her that I had hardly any feeling from the waist down(couldn’t walk very well) and was blind in my right eye. She told me that it was the weather(?) and to go specsavers.If it wasnt for the optition who spent 2 hrs with me then sent me straight to A&E then would never got to bottom of it. MRI’s and lumbar later here I am.

Should have gone to Specsavers eh?

Again thanks for the advice and the hugs look forward to talking again

BeckyX

Hi again.

I cant beleive that gp said your problems were down to the weather and to go to specsavers.

Sounds like the gp hasnt qualified to practice at all!

Unbelievable!

luv Pollx

Hi Poll

Thanks for the support, I’m glad that there are people out there who care.

I have got a ms nurse but haven’t discussed any talking therapy with her yet. Maybe I should bring it up with her.

I always feel a bit guilty putting stuff on other people so try not to bring things up. I suppose its about time I admitted my shoulders just aren’t that broad.

Looking forward to getting to know you all

BeckyX

Yes Becky, you MUST offload.it will and does help.

Ring the MS nurse re possible meds, yeh?

luv Pollx

Thanks Poll

I will contact her and sort something out

Bit annoyed I didnt join forum before just struggled on my own never chatting wirh people who actually get it.

Thanks a lot

luv BeckyX

Hi Becky,

I’ve has ms 17 years but am a newbie here as I was heavy in denial. Big error on my part! The people here are very supportive :slight_smile: Your MS Nurse should be a big point of support for you. They will have been asked it all before and are generally brilliant at what they do.

You have just been given some big stuff to try and get your head around, be kind and gentle with yourself. One day at a time helps.

Take care of you

Sara x

You’re first post sounds so like me!!Not on any meds apart from Amantadine. And was ‘ok’ with it as saw it as just a label.Easy to do when it doesn’t affect you too much in your life.And maybe my form of denying it as a life altering illness

I also come across other MS folk in my work(community care) and tell myself I’m lucky as can still do xyz…and wasn’t dx with MND…And just tell myself that it is unknown how I will progress so I could be as I am now for 30yrs or be in a wheelchair tomorrow!I try not to look too far ahead as would go nuts and am wary of wallowing.

Not to say I don’t have my downs I do -god I do !!! Then feel guilty as can do so much more than some

I am on low dose of anti depressants that help take edge off the darker moments.

Will say this site is probably only support I get apart from OH, tho they don’t realise (I lurk a lot, lol)MS nurse has too many folk to see and tbh deals with more disabled MS folk than me.Not blaming her she has a huge area to cover despite being in Scotland and in an area that has a high rate of MS people . And drs don’t reallty want to know unless am really bad

hi becky

i suspected it was ms so my dx was a relief!

i always play the bad stuff down, dont want my 80 yr old dad getting upset.

but everything is NOT ok. it robs you of an awful lot.

however there is always something that can make me smile.

well i will try to give you advice as you are a newly diagnosed mser.

contact your ms nurse and ask what dmd’s are available to you.

get advice on neuropathic pain killers

if your bladder plays up get a referral to a bladder nurse

if your walking is affected. get a referral to a neuro physio

your ms can help with all these

if your ability to cope in your home is suffering you need to be seen by an occupational therapist (mine put handrails in my shower)

it sounds mad how many people are involved but they are all so nice and helpful.

take care

love carole xxxxx

i meant “contact your ms nurse”

hi there just to say every friend you,ll ever need are right here waiting for you ,you,ll never be alone theres always some one here to talk to and give help and advice.but some times all you need is someone to listen to you and thats what we all do for each other.

take care xxx

Hi Becky

So sorry to hear of your diagnosis and please be assured that your reaction is entirely normal. Being diagnosed with MS is rather like a bereavement and we can go through the same emotions as those suffering a bereavement. Known as the Grief cycle the stages are - denial, anger, bargaining, sadness ( which can sink into depression ) and finally acceptance. And because of the fluctuating/progressive nature of MS we can go through these stages several times. But sooner or later most people come to accept their condition and to adapt. However it is not easy to do this on your own - and there is a lot of help out there so I would encourage you to find support.

This forum of course is a great place to start - there is always someone here to offer a kind word or to provide useful information. Your MS nurse as suggested is another place to start. You should also contact your local MS Society branch - each branch has one or more trained support volunteers who can offer a listening ear or signpost you to local services and groups. My branch runs a course for the newly diagnosed and their partners which most people find really useful. Try the Near me facility on this site to identify your local branch and they will tell you how to contact your support volunteer.

You could also find out if there is an MS Therapy centre near you - there is a network of these centres all over the UK offering all sorts of therapies incuding physiotherapy, oxygen therapy, acupuncture and yoga. They can also be good places to meet people with MS. I have made several good friends via my local centre and five of us now meet for coffee every month - we call it The Crocks Coffee Club.

My MS society branch also has a social sub-group which meets a couple of times a month. We don’t sit there weeping into our beer or coffee or spend the whole time talking about MS - but if one of us is having a bad day, we understand. There is a saying that you don’t ‘get’ MS until you get it! So I would encourage you to find others with MS whom you can meet and chat with from time to time.

are also helplines - the MS Society has a helpline staffed by specially trained available Mon - Fri from 09.00am - 09.00pm. And another MS charity MS-UK has a helpline staffed by qualified BACP counsellors available 09.00am - 05.00pm Mon - Friday. You can also access face-to-face counselling via the NHS Talking Therapies service. If you do have a Therapy centre near you they usually offer counselling by counsellors experienced in dealing with people with MS and their families.

And finally there are some excellent publications from the MS society and MS Trust which provide information on every aspect of MS including coming to terms with diagnosis.

Hope this helps - happy to ‘discuss’ further if you wish to send me a private message. Trust me, there is life after MS.

Take care

Hilary

Hi Becky, nice to meet you. I have been dx 7 years but like you looking back I think I had it for a few years pervious to that. I have been on Avonex DMD for 3 years and up to this last few months have done really well. I hope yo get an appointment with your ms nurse soon and she/ he will be able to give toy some advice. Take care and try to keep smiling, this board is such a support. Love Karen x

Hi everyone,

All I can say is WOW!! Thank you all so much for your kindness and understanding.

Its such a relief to read all of the support and advice you have all given me.

Maybe I’m not alone in all this afterall.

Will definately look into everything you have all said to me.

Again Thank You All for the help and look forward to getting to know you.

You are all stars

BeckyX