Last reply 4 years ago
Scared to go to MS talk

I have been invited to go for a days talk about MS in Elstree, London next week, I said yes but am worried I will start to feel down, especially as am on an up. I find seeing other people with noticeable MS symptoms difficult, just because it raises my own fears of the future.. I want to meat others with MS but really just positive ones, I guess because it’s all been so negative so far. I raise fears with my MS nurse and she has to be honest weighing on the negative side. I want this to just become part of my life, my husband has asthma and has learned to live with it. Why am I finding MS so hard to live with? I want to go but will it make me worse? I said to my doctor, it’s like I got two illnesses, I got MS and depression/anxiety.

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4 years ago

You need to look at all the positives you can get out of the talk.

Yes, there will be attendees there that have various degrees of MS, but bear in mind that most MSers which are managing the condition well won’t be there as they’ll be working.

The more adversely affected may have had the condition for years and haven’t been able to benefit from the more recent advances in medical science, which are now available.

So concentrate on the positive aspects……

4 years ago

Hi @baobab don’t be afraid to go I went a seminar Getting to grips with MS at Salford Royal in Manchester invited by MS nurse was a great course for me and my husband yes I saw a lot of people with MS worse off than me we learnt a lot from this course about Physio, Access to work, Occupational Therpists, MS nurses and of course people from the local branches of MS Society very informative you won’t regret it all people there very friendly was able to speak to a lot people with different aspects of MS you won’t regret if possible take some one with you for support if you can.


4 years ago

I can understand what you are going through, back in 2003 I felt the same as you do now. I chose to ignore everything about it and went on with my life. I remember seeing the ms nurse at my local hospital once and they were very positive but other than that I haven’t wanted to.
I haven’t had a relapse and to be honest it was only optic neuritis and I feel like I only see people much worse than myself which at times does worry me a little.
The doctors have now told me I have benign ms which as long as I keep happy, healthy and don’t pile on the stress I should continue like this for a long time. I know ms is unpredictable but I find if I’m feeling good then I should pack those worrying feelings away and focus on living my life now.
You need to do what’s best for you and if you don’t need any support right now then just focus on keeping strong, healthy and happy for your family. X

4 years ago

I have attended a few talks on MS by the MS Society, MS nurses and multidisciplinary teams. I have found them all very helpful and informative. I had the same worries as you but each time the discussion always tended to look at the positives and at times the funny side of living with MS. Everyone attending is either in the same position as yourself or has been in your position, which I found very reassuring and welcoming.
I would recommend anyone who has a connection to MS to attend.

4 years ago

@baobab, who is the talk organised through? I would be quite interested in attending – I’d be a relatively positive MSer

4 years ago

Hi @baobab I went to a talk a while ago arranged by the MS Society to talk about access to physical activity for people with MS. I had never met anyone with MS before and while there I met a lovely lady who I’ve met a few times since for a coffee as she lives fairly locally, so it’s been nice to talk about our similar struggles with MS. While there all the people attending seemed to be at varying levels of disability or ability which surprised me but just goes to show how varied we are. I too am on an up at the moment (Been over a year..)and long may it continue but there seems to be no guarantees with MS.. We just have to make the most of the “ability” that you have for the time being I suppose.. best of luck if you do your talk @baobab 🙂

4 years ago

At the end of the day you need to make your own decisions. It may be a wonderful opportunity but don’t go just to keep the peace or so as not to let anyone down who recommended it in the first place. If it’s going to stress you out, ask yourself if it’s worth it. And if you do decide to go, have a Plan B for an early exit if you feel at all uncomfortable. IMO, it’s when we feel out of control of decision-making that the MS can get unbearable. xxx

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