Forum

Support groups

Hi

My MS journey has been very quick.

From having an MRI done privately in February because my Osteopath thought I may have a boney spur in my neck - instead it said “likely inflammatory spinal cord lessions, A Neurology opinion is required”

The symptoms I have are comparatively mild, I have a herniated disc in my lower back and had always put the numbness etc down to that. Tiredness down to a lot of exercise (running my first marathon in October), poor sleep down to my age and the potential onset of the menopause. I was happily oblivious to the real cause.

I don’t know if it helped because I had had the initial MRI done but I have gone through the system very quickly. MRI with contrast was done in March, longest wait was for those results. It revealed that my brain also has demyelinating plaques. A lumbar puncture was attempted but I couldn’t tolerate it (I have a needle phobia).

I was diagnosed with RRMS a couple of weeks ago and have to decide which DMT to go for - I have spoken to my MS nurse who is lovely, I am meeting her next week.

I am struggling emotionally, I divorced earlier this year so now live alone and feel totally alone.

Are there any support groups where people meet up? I think it would help to talk to people who understand the range of emotions I am going through.

I find it hard to talk about without crying.

Sorry for the long ramble

Julie

Hi Julie,

I’m sorry that you’ve been diagnosed. MS is a very confusing disease at the best of times. The good news is that there’s a lot of support.

You’ve already met your MS Nurse. They are brilliant at advice and support and she will guide you through the maze of choices to help you get the right answers for you.

There are groups all over the country. If you look at the top of the MS Society web page, click onto the Care and Support tab. On that page you’ll find a link to Local Support. Enter your postcode and there’ll be a list of places near you where people meet up. My local group meets up at a nearby pub.

This forum is an excellent place to ask questions, discuss ideas or just to let off steam. There is a huge amount of experience and empathy here because everyone either has MS or is close to someone who does.

What would you like to talk about?

Best wishes,

Anthony

Further to the advice from Anthony; there are MS Therapy Centres across the Country; MS Therapy centres

Here you can get things like Hyperbaric Oxygen; Physiotherapy plus other things.

George

Hello Julie

Being diagnosed with MS is serious and horrible. Don’t expect to be able to ‘come to terms’, or ‘accept’ the diagnosis over night.

It’s not unusual to feel very emotional about it, and to cry at the drop of a hat. And then you might find yourself ranting and raving, swearing up a storm about it (believe me, there are times when I still do!)

You went from a perfectly normal, healthy life with everything to look forward to an MS diagnosis very, very fast. I’m still not sure if it’s better to have things happen that way or to be long and drawn out over months and months, or even years. Which is common. Many people spend far too long living in what’s often described as ‘limbo’. The total opposite of your journey. When such people eventually get their diagnosis they are relieved.

Your diagnosis at the very least has come complete with an MS nurse and the promise of some disease modifying drugs (DMDs). These are designed to reduce the number and severity of relapses. They won’t cure existing residual symptoms, but they should keep you relapse and the concomitant, disability, free for years to come.

Before you discuss them with your MS nurse (who will be a massive help to you, honestly a good one is worth his or her weight in the finest cheese!), have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid All the DMDs are listed. They all have an expected relapse reduction rate, but also come with potential side effects. Not that everybody gets side effects, but you have to be aware of them.

Your MS nurse will guide you through, you should end up being offered a number of options. So familiarity with the various drugs will help.

Don’t forget, we are here and will do what we can to help. We might only be a ‘virtual’ community, but are a support group nonetheless.

Sue

ask at your next ms society social event if any others would like to meet up more often.

look on facebook, there are several groups for people with ms.

i joined one and we meet on the first sunday of the month.

somewhere we can eat and have a drink.

i do the organising and it can be a bit fraught because as we know, ms can be unpredictable.

therefore once i was left poor billy no mates as nobody else showed up.

the bar staff were concerned and kept on asking if i was ok.

as if i’ve never been stood up before!

it’s mostly worth it though.

Julie Your diagnosis story is similar to mine. Fit and well- then numb toes in Feb 16 led to a series of MRIs (March 16/ June 16). Lesions on my brain and spine led to a diagnosis of RRMS. It was a sucker punch from the blue - and much you have written about how you are feeling resonates with me. I found a few stories from MSers who gave me hope. People that were managing their condition, living and loving their lives and families and keeping active (including marathons and even ultras/ iron men). I know this isnt the story for everyone - but it gave me the courage to tackle the diagnosis head on, look into DMDs and through that find hope. My choice of DMD was Lemtrada - and I celebrated being a year post treatment yesterday by walking 100km along the south coast (and raised money for MSS along the way). I feel well now - and hope improvements in MSS treatment and care over recent years will help keep me that way. I would be happy to share my number in a private message if a call would be helpful Also, I’m the admin for a Facebook group for parkrunners with MS. Given you are a runner, you might find that a good group. Facebook Groups Xxx

Thank you Anthony

I think the forum is going to be a great help to me over the coming months

Thank you George

Thank you Sue

You are so right it is horrible. My Sister who I thought understood said yesterday “your fine, it’s very common so many people have MS and don’t even know it” It felt like a kick in the teeth, a pull yourself together there is nothing wrong with you. BUT THERE IS I wanted to scream at her but I didn’t.

Virtual or not you are a support group and I am very grateful

Xx

Thank you Carole

I will have a look on Facebook

Hi Katy

From the bit of research I have done so far Lemtrada is the option I am favoring at the moment.

Well done on your 100km, I don’t think I will ever be able to do that, my long run this week was17 miles - only 8 more long runs before Beachy Head marathon!!!

I will look up the Parkrun Facebook page and send you my number

Thank you

xx

Hi JDD2710, what you describe is very similar to how I felt. I also live by myself and my friends just don’t seem to get it. If it’s any consolation when I spoke to one recently to say that I have now been offered DMT, I got, you can guess it… but your well! To which I said yes and I want to stay as “well” as I can!! I would add to the advice above that the MS Society and MS Trust both have helpline phone numbers and if you are employed your employer may possibly offer a confidential well being phone line counselling service. The other thing is not everyone is offered the full range of DMTs but I’m sure your ms nurse will advise. I’ve found this forum very useful, both for asking advice but also as confirmation that the feelings and emotions about everything are completely normal and only to be expected. It makes you feel less alone. Best wishes.