Forum

I need to chat to people with MS

Hello

I am 25 and female and got diagnosed about one month ago. I am still in shock but like to think I am coping better. I think what would be beneficial is to chat to people … I really want to talk to other MS sufferers who understand. I often feel alone in my thoughts and find myself constantly putting on a brave face at work, around family etc. It would be nice just to talk and let it all out. I still have may questions…hopefully my MS nurse will help…after four weeks I’m still waiting for a referral letter…is this the normal amount of time to wait? I feel like the NHS has forgotton me. I have not started treatment or have not been put on anything.

I hope someone wants to talk with me! please reply or inbox me, thankyouuuu =D

Rosie =) xx

Hi Rosie,

Check to see if there is a local MS group to where you live, you can do this via the MS society, click on the ‘near me’ orange icon at the top of the page. The group near me have a weekly get together through the day and also one evening a month. Can’t say if it would be the same in your area though.

There is also this forum if you have any questions or want to rant about anything.

I was dx in October, still put a brave face on at work and with friends, It will take time for you to get your head around things, it different for everyone though.

I was referred to the MS nurse the day I was dx, saw her after the neuro, but I was diagnosed with highly active RRMS, and put on a DMD almost straight away, different areas have different ways they work, so I can’t answer that question for you, sorry.

Give the hospital a ring and try to get contact details for the MS nurse.

Any questions, etc don’t hesitate to post on here or PM me, but posting them would be better as I’m still learning myself.

Take care

Cherry x

Sorry, should have said that posting them would be better as there are a lot more people on here have a lot more experience than me, there will always be someone with an answer or be able to point you in the right direction.

x

Hi Rosie, I was diagnosed just over a week ago and feeling a bit lost at the moment. All I know is when my next neuro appt is to start medication. Haven’t a clue whether the neurologist will refer me to ms nurse or if I need to self refer. I looked for our local support group and have made email contact with someone who is there for those who have just been diagnosed. She has anyway replied asking me to call and she’ll help me with contacting the ms nurse. Probably worth you looking for your local group too. I think I have a 101 questions to ask the nurse about symptoms etc. It’s a tough time at the moment and feel in limbo. Fortunately I work as a HCA in a Dr surgery and benefit from the advice and positivity from the gp’s but is not the same as talking to people going through the same thing X

Hi Rosie and welcome. Being told you have MS is a shock for us all but you do eventually come to terms with it. It is good to talk about it, to your friends or family. Or even as already suggested join your local MS group. There is of course the MS helpline, they are excellent, you can easily find the phone number on this site.

I was Dx a few years ago now and have had it for over 40 years and still I find the need to talk to other msers. When I was Dx I was contacted by a MS nurse within days, therefore I would suggest you give your neuro’s sec’ and ask who your MS nurse is and when will you be contacted.

if you feel the need to rant or rave feel free we will listen and try to help you.

Just remember you may have MS but MS hasn’t got you.

All the best

Janet

x

Hi everybody i was told I had ppms by my neurologist on Tuesday after having what everyone including a and e thought was a stroke on February 6th shocked scared relieved as know why I’m wobbly one minute up one minute I’m down.

On a roller-coaster so no how you feel coping by talking to everyone diagnosed Tues rang ms helpline on Wednesday went to local support group Thursday did physio met lovely people.

Hit me like a ton of bricks yesterday cried and screamed then phoned a friend said let’s go for lunch only subject off the agenda is my ms!

Ok today need a nap bit wobbly so I bought my first walking stick just keep talking to people and trying not to dwell my mantra is it have Ms but I’m not Ms.

Stay positive life’s a journey and we’re just taking a different route xx

Thanks for everyones messages. I think for anyone diagnosed at the start it is life changing and scary because you don’t know what is going to happen. I have had a letter through to see my neuro in July…I am shocked at how far away it is but at least I have an appointment date now. I work n a pharmacy so am doing research about the drugs currently licenced for MS. There are surprisingly more than I thought and there are many drugs also to treat the symptoms such as Fampridine which can aid in walking and botox used for bladder control. I am glad there are these drugs available in the days we live in now.

Rosie xx

Hi rosie I was diagnosed July last year. It was such a scary time and I suppose I’m still coming to terms with it all still. I do talk to people with ms who I have met through social media and tht has really helped. Please feel free to private message me if you want to chat Rose X

Hi Rosie, I was diagnosed in April 2014 after a battle, it takes a while for everything to click into place.

Have the faith though, once you have your MS Nurse lined up and the Neurologist know you, things move pretty fast and you start physically to feel better. Gabapentin and Amitryptaline are my daily staples, they have really helped me with horrific neuropathic pain and spasms and I have a lot of faith in them.

For emotional support, do you use Facebook/Twitter? There is a large interactive support system there, on FB there is Women With MS and MSpals both of which are closed groups, meaning your timeline or friends don’t see what you are posting, they can be helpful if you can weed through some of the posts.

Best advice I could give is to be kind to yourself, you have got this far and you are on the cusp of fighting back, it’s not all doom and gloom, we can all have some really bad relapses, but we can also carve a happy life inbetween.