Going out of my mind!!

Hi everyone,

I’m new here but in desperate need of some advice.

A quick overview. I had a scary onset in 2018, MRI showed brain and stem lesions. Lost use of left arm/side - it came back but never fully recovered. Since then had vision trouble, speech issues, swallowing issues, wonky legs, balance, fatigue etc etc!

I’m currently classified as CIS. I’m awaiting an MRI in March to check the progression. I know looking back over the years that I’ve probably been relapsing and remitting for years albeit with much milder symptoms.

Coming to terms with all of this has been and is very tough. I’m awaiting CBT to help give me a more positive outlook.

The problem now is that after racing up four flights of stairs last Wednesday (which was admittedly a ridiculous thing to do) I can’t get air down into my lungs even though my oxygen is at 100%. I’ve been to countless out of hours doctors, A&E, over the past few days and because I’m obviously anxious about this symptom they are putting it down to a panic attack…which I can safely say it definitely is not. I’m panicking because I feel like I can’t get air into my lungs - not the other way around. I’m so frustrated and frankly terrified that I’m suffering so badly and it’s been wrote off as mental health - I was told to go home and do some colouring in to relax! I’ve spoken to the MS nurse today and she has said the same - anxiety! I feel like I’m banging my head against a brick wall and nobody is listening to me. The only person fighting my case is my husband because he’s knows me better than anybody. I’m now paying to see a private neuro tomorrow to try and get somebody to listen.

Can anyone tell me if yourselves or anybody that you know, have had a feeling of breathlessness/can’t fill lungs and it was neurological? Chest X Ray was clear, bloods normal at A&E - hence they think I’m imagining if all.

I’m so distressed and feel so alone that nobody will listen to me. I’m exhausted…and breathless.

Thanks so much in advance for any help or advice.

Best wishes,


Hi Becks

Sorry you’re having a hard time of it! I also sometimes get shortness of breath and feel like I’m not getting enough oxygen in, so I know it’s worrying feeling. I also get panic attacks & anxiety though, and personally I think that’s what causes the shortness of breath. No health professional has said that to me, it’s just something I’ve concluded from experience. Considering everything that’s happened to you in the last couple of years, there’s a lot for your emotions to deal with. So it would be understandable if you started getting anxiety as a result - even if you’re not consciously thinking about (our emotions can be funny beasts at times, doing stuff behind our backs without us knowing). You could always try asking your GP to refer you to a relevant specialist, so they can measure your breathing. But also look into symptoms of anxiety and panic attacks as well, See if any of it resonates. But even if it doesn’t, it may be helpful to get some talking therapy of some sort, to help process stuff.


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Hi Becks, ok YES. But do you really want to hear the answer?

I have had this on and off it kicked off worse when my husband died.

It is anxiety.

I feel like I cant take a deep breath in and am going to suffocate … its scary and horrible.

I had a physio come and see me and showed me how to deal with it.

Take a deep breath in from the bottom of the lungs and then slowly let it go. I was assured i would not suffocate. even though i thought I would.

I still get it when i am over heated and anxious or upset, but i know how to deal with it now. You have to STOP FOCUSING on it, the more you focus the worse it feels.

So deep breath from bottom of lungs then go do something, even go for a walk. running upstairs and getting breathless is caused through fatigue. so you then got yourself into a panic.

Fagigue can make us feel like its just too hard to breath. Having a shower for me will or can trigger this feeling too, but i have it under control now.

Once i get that really deep breath sigh i know i am passed it.

Its totally normal, even my sister gets it she doesnt have MS.

so next time you feel like it, try it, focus on something else you need to strengthen your breathing/lungs

  1. Diaphragmatic breathing. …
  2. Simple deep breathing. …
  3. “Counting” your breaths. …
  4. Watching your posture. …
  5. Staying hydrated. …
  6. Laughing. …
  7. Staying active. …

Also just standing tall and upright can help.

maybe try some relaxation music or yoga.

It is scary really scary but the trick is not to panic and recognise it for what it is. Believe me i was one of the strongest people out there, and i got this.

big hugs, it is frightening but its normal. xxxx

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Hi Becks,

So I get this, it comes and goes, I can honestly say I’m not having a panic attack, or anxiety, it just comes on, lasts a few days and goes, the key for me is I don’t panic, I’ve spoken to my GP and MS nurse and because they both know me have never suggested that it could be either of these things, it tends to happen when my fatigue gets worse, so I’ve just put it down to that. However that could just be me, best you ask a professional, good luck.

Hi Becks. I also get short of breath. It can happen when I am sitting on the settee doing nothing. I went on the nhs website and it tells you to do slow breathing exercises. They definatley helps. The trick is to try and relax not to panic. It wil only makes things worse.

I get it too, with me it is also as someone else said when I am really fatigued.

Becks, we ARE listening… I have been (officially) diagnosed with RRMS in 2003, here in the UK, at the age of 40 (I emigrated from The Netherlands in 1995). I have had symptoms since my early teens, and some close family members (‘abroad’) still claim that ‘it’s all in my head’, in spite of the fact that the UK is ‘too far away’ to pay a regular (‘regular’ with capital ‘R’…) visit… (plus in spite of the fact that one of my children is mentally disabled!!)…)…

I can still sort of move as in walking (with support) etc and my biggest ‘persistent MS enemies’ throughout the years, have been fatigue together with a growing lack of bladder control (the most ‘noticeable’ issues), this until one of my legs started playing up/ dragging which made me visit the GP around 2003… A referral to a neurologist (Mr Martin) followed and ‘a life with MS’ became, after the necessary 3 tests, soon ‘official’… I was even relieved, albeit for a short period, that there had been genuine reasons for the confusion in all those previous years!

My wife has been my rock from the very start, this in spite of all the other sh*t we have had to endure…(my wife’s haemorrhage, from which she recovered for as far as possible(!), included, and the many many issues we had because of my daughter’s health…). Your other half seems very supportive too and He is the one you need the most!

I am now convinced that I had my very first attack/ relapse at the age of 11 (extreme cramps in my whole body, short-lived -one painful night- but never forgotten because of its intensity and a GP on duty visiting that weekend…). In the years thereafter my ‘school career’ was shortened due to never-ending tiredness and a total lack of concentration/ energy (I blamed my bad habits, like smoking, watching too much tele -even in the late seventies!- and ‘alcohol fuelled weekends’…). I have suffered with cramps, especially in my legs, ever since, at its worst when having an attack/ relapse, but these have been relatively rare in comparison to certain other MS sufferers (I remember every single one of them as there only have been a few although very intense when occurring!).

I suspect that I was ‘promoted’ to SP/PP at some point because of the lack of regular attacks, and the progressive ‘character’ of ‘my’ MS, albeit very slow for as far as I am concerned.

Bla bla bla, for me it’s not the end of the world, but I do realize that having a supportive partner makes all the difference, how lucky am I!..Becks…, what was your question again?.. Issues with breathing…? Sorry, I started my ‘MS career’ while being ‘Marlboro Man’ (I quit 11.06.07…) so I must have been breathless too… It was actually the fact that you mentioned all these typical MS signs that made me respond… (I apologize for going on and on and on…). What I actually tried to say is… you’re not on your own, take care, Jos:)