Hi all,

I suffer with Anxiety but since my MS (PPMS) diagnosis it has increased and of late to a ridiculous level. I just wondered if my MS (& symptoms) have heightened it!

Does/has anybody else experienced this too and if so how do you/did you cope/manage it?

I would be greatful for any advice or ideas.


Twinkle Toes x

hiya tt

last year i experienced anxiety/panic attacks. diazepam and several counselling sessions helped me. i still experience it occasionally now but the breathing exercise and other tips i was taught along with me recognising whats happening and know that it will pass. i would have no hesitation taking.doing both again if needed. maybe discuss with your gp?

take care, ellie

ps i avoid drugs when poss but am aware that sometimes a wee kickstart is required.

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Hi Ellie,

I have previously tried tablets but unfortunately I had adverse effects with them so now I’m reluctant to try any again. I will however do what you’ve suggested and see my Doctor (when I can get in that is) and I am also waiting to see my MS Nurse.

Thank-you for your advice.

Hope you’re keeping well?

Twinkle Toes x

Often these days, GPs recommend CBT for anxiety. Perhaps that’s something you could consider, drug free therapy?

See what your MS nurse and GP say anyway.

Hopefully you’ll get something sorted. Living with the kind of anxiety that you can’t get out of your head is horrible. I remember being incredibly anxious as a young woman. I think I eventually just learned to live with myself. So I can’t come up with any real solutions, just sympathy.


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Hi I started getting quite bad anxiety a couple years back. It’s not surprising that MS contributes to this. We have an unpredictable illness, with a lot of uncertainty about what the future, or even what each day, will bring. So that can cause anxiety. Whereabouts do you live? There’s probably an NHS thing called IAPT in your area (Improving Access to Psychological Therapies). There’ll be a website with resources covering a range of mental health issues. And you can also self refer for things like counselling or group therapy. This is the Sheffield one - I used IAPT to see a mental health worker at my GP, which has helped. I also taker sertraline, which has helped take the edge off. I’ve also just started seeing a neuropsychologist at my hospital. Too early to say if that;s helped, but our first session was promising. Dan


Hi Dan,

Thank-you for response.

I’m sorry to hear that you too suffer with Anxiety but that’s great news that you have found something that is helping you. Yes, I suppose that with MS being such an unpredictable illness and all the uncertainty about our future that we find ourselves having other health issues added to the mix.

Tbh I don’t think I have heard of IAPT but I will certainly look it up later on (thank-you).

I am waiting to see my Doctor (but you know what it’s like trying to see them) and I have just made an appointment with my MS Nurse but the earliest she can see me is next month. However, I have started seeing the Neuropsychologist but that is early days yet as I have a complex case - always knew I was special!!!

I’m not too keen on taking medication as I have previously suffered with adverse side effects which were very off putting so I’m trying to find out what else is available and I have been given some ideas now that I will follow up.

Take care

Twinkle Toes x

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Hi Sue,

Thank-you for your response.

I have tried the Doctors but still can’t get in as yet so I will try again next week but I have managed to get an appointment with my MS Nurse but unfortunately that’s not until next month.

However, I have started seeing a Neuropsychologist but it’s only very early days yet as I have a complex case so it’s going to take a while with things I think but I have been given some ideas and seen some ideas on here that I will look into.

I’m sorry to hear that you have been through a similar thing but I’m glad that you have managed to get through it your own way and that gives me hope that I could eventually get through it too, so thank-you.

Take care

Twinkle Toes x

after my husbands death my anxiety and panic attacks hit the roof.

I now write my experiences down. If i start to have a panic attack I go and do something, if i feel overly anxious i write.

also ring someone a friend or member of family i have an anxiety buddy who i ring if i feel really bad and she talks me out of it.

YOU can have anxiety just with MS anyway and getting diagnosis can make it worse.

I found my anxiety buddy works well, and i also have counselling.

Remember there are lots of different forms of grief and bereavement. Having a life changing disease can cause you to have grief and bereavement and its learning to find coping strategies that work for you. One good thing is I know when i am having an attack I recognise it now, so its much easier to deal with.

Dont be too hard on yourself.

Anything could way of dealing with it, if you can is go for a long walk and get some fresh air.

I hope you feel better soon it does get better though honestly. If you want to know how i feel follow my blog doing it has helped me a lot.

big hugs. xxxx


I used to be very together! Mentally strong etc. At least six months before my diagnosis, ‘stress’, became a physical thing. Eg. I would sweat, have ridiculous and unexplained fear, pins and needles, heightened numbness, breathlessness etc. I knew nothing about anxiety or anxiety attacks.

I tried to ignore it and carry on at work as normal. However, memory loss, toileting issues and numbness got me an MRI and subsequent diagnosis of RRMS.

My GP supports my thinking that my anxiety is an absolutely, real part of my MS. To date, we have tried Prozac (I threw it up), citralopram, counselling (six free sessions), and now I am awaiting a telephone consultation from the mental health team (next Wednesday) with a view of starting cognitive behavioural therapy.

This ‘new me’, is so annoying. I am in charge of a big school department and in charge of other staff. I am off of work. It is completely debilitating. I think that it is part of my MS. Scaring somewhere in the brain. I do not believe that it is simply because I am ‘coming to terms with my diagnosis’ (as some neurologist’s suggest). I am not in control of my anxiety stuff. Eg. The other day stopping at the red traffic lights, my car automatically turns off. I panicked that I couldn’t drive?! Panic took over me until the driver behind me got out and talked me through ’how to drive’, ridiculous!

A yoga teacher has taught me three breathing exercises, but in the midst of rising anxiety, I forget that I have learnt them.

I am certain though, that longer term, there will be things that will help and I know that I am not alone in this.

sorry for the long, and somewhat, unhelpful reply. Warmest thoughts. Ali

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Hi Ali,

Thank-you for your message.

I’m sorry to hear about what you’ve been going through but I can totally relate to ‘used’ to be Mentally strong something I’m totally not anymore this MS has a lot to answer for.

That’s great that you’ve tried a number of ways to help yourself but I’m sorry they haven’t really helped you. I’m very reluctant to take any medication for my Anxiety as I’ve suffered with adverse effects from tablets so I’m having to try and find other avenues. Like you I’m waiting to find out about having CBT as I’ve heard that it’s very good and helpful. I’m also waiting to sort some Counselling out too although I have had a few sessions with the Neuro Psychologist but it’s early days yet.

Yes, I agree with you that Anxiety is totally debilitating but with having MS as well it’s double torture and I think the only people who understand are those who are suffering themselves. This is why I put my post on originally to see what other people thought and if they could give me some advice, which they have and I have acted on (so thank-you to everyone).

I hope all goes well for you on Wednesday and that you’ll be able to start CBT soon. Please let me know how you get on.

Take Care

Twinkle Toes x

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I too suffer with severe anxiety at times and i told my neuro i thought i have a lesion on the part of my brain that controls anxiety,because it comes on very suddenly then calms down after a while, like all my other symptoms.He looked at me as if i were mad lol,like he does whenever i mention any other symptoms.But i am convinced it is a lesion causing it.I have a really good relaxation CD by Martin L Rossman called ‘anxiety relief’ that helps me a lot, i got off Amazon he has such a relaxing voice and by the end of it i feel so much calmer.