Last reply 1 year ago
Feeling like no one understands

Feel so crappy today. I’m on a few online groups that are supposed to be there to support people with MS. However, there always seems to be individuals that are not yet diagnosed that are disappointed when they are told that their doctor doesn’t think they have MS. I find the behaviour of wanting an illness unsettling when this illness destroys every part of your life very very slowly. An illness is not a trophy to aim for. I understand the uncertainty of the diagnosis process. Personally it wouldn’t of helped me to be on a page for an illness I didn’t yet know I had. I have a strong family history of autoimmune disease… My sister has MS and my twin Lupus and Addison’s disease. When I developed symptoms MS was the furthest thing from my mind and I remember well the earth shattering day I got my lumber puncture results. I don’t know if I’m wrong to get annoyed by people seemingly wanting this diagnosis. I get that it’s sometimes scarier to not know the devil you are facing. Maybe there is something wrong with me to think this way. Maybe my anger is misdirected? I just can’t fathom people being disappointed to not be diagnosied with MS. Am I being weird!?

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1 year ago

Not at all weird, but I suppose it’s a clue to your own state of mind around your MS.

1 year ago

That’s what I thought. Perhaps I’m just not coping well at the moment with the diagnosis of MS (even though it’s been six years) I know I feel as though the doctors have abandoned me to just live with the symptoms I have and get on with it. Maybe my anger is at having this illness. I just can’t understand anyone wanting the diagnosis of MS. Maybe it’s that old saying that people don’t know what they’ve got till it is gone. When your health goes you look back and would give anything to turn the clock back.

1 year ago

some people just need to be prepared for the worst, then how they deal with that information is a personal choice.
For you,this was not the way you dealt with your diagnosis, equally for some people wanting to belong,is about them having people to turn to.
The good news is you recognise that your feelings are directly related to your own mood and loss.
All I know is there is no right or wrong way in how we approach life, just some ways are more appropriate, in some people’s eyes.
Personally I just open my eyes each morning and wonder which mechanism of my body is on strike and how the rest of any useful parts might help me to get through the day! The actual diagnosis is so far in the past.
Look after yourself 🙂

1 year ago

Ellen May I can appreciate how you feel. I wake up never knowing which symptom is going to be at the forefront today. I have RRMS so never know when the next relapse is going to happen and which part of my body is going to be affected next. It is horrible living with that uncertainty isn’t it!? I think today I just needed to sit back and think, what exactly it is I am angry at? I guess everyone is different in dealing with their diagnosis process. Personally I don’t want to obcess about the worst case scenario. I used to have the mindset that I need to do what I can while I can but changed that to doing what I can because I can. I try and enjoy the things I can do now. It’s just some days I really hate this disease because it seems to take over. Guess I couldn’t quite correlate why anyone would want this life. I can see your point now about wanting to belong somewhere. So I suppose if it helps them then so be it. I just wished they would exercise a bit of sensitivity to the fact that being diagnosed maybe an answer but it’s not an easy path to be on after.

1 year ago

I understand where you are coming from – but also understand that not having a diagnosis MS or otehrwise is pretty hard to cope with too. I had a phase during my diagnosis process where I was told it could just be symptoms for no reason and I really started to worry that I was making everything up and that I had worse issue to deal with than an auto immune disease. I was quite relieved when I was told it was MS – now it had name – something I could tell people and research.
Doing this in a forum can’t coney frustration or tone of voice and it makes ir harder to judge and we just get the blank facts…this is a safe space to vent, ask questions etc so I’m glad you shared…

1 year ago


I was one of the people you speak about who found themselves hoping it was MS. The reason I was relieved and yes it was short lived, but watching my mom die from a brain tumour was what I thought was the alternative.

I battled with major anxiety and unknown symptoms for 6 months and ms seemed to give me a brighter future with my 2 small children. I was wrong maybe about the brighter but longer was fine with me.

I understand that people may not get it but it was a glimmer of hope in a really horrible time. I know that sounds crazy but I felt I needed more time than some of the other alternative gave me.

I don’t think any of us wanted ms but a relief is maybe the wrong word, thankful that I am here, yes I am.

At the moment I am really struggling with pain it’s off the chart sometimes and very uncomfortable the rest. I wish I could be healed and I hope one day we all can.

Keep going, we have little option I know but to vent is a release even in the dark times.

Blessings Andy

1 year ago

I was dx ,20 odd years ago, & I remember wanting them to dx it. I’d worked out that MS was the only thing that made sense of all my weird symptoms. I was just really glad that I wasn’t going mad as I’d seriously begun to doubt my sanity what with all the weird things that were happening.

1 year ago

I think people are sick and tired of not knowing what is wrong with them. I had symptoms for ten years before my GP sent me to neurologist. Even though I come from a family that has autoimmune disorders, he kept telling me I didn’t have MS. I went through symptoms like MS hug for three months, legs that stop working in the middle of a bicycle ride, ect by myself with no idea what was happening and no help. I was almost relieved when they told me it was MS, I could finally have someone believe me and get some help. Like Vicy I was starting to doubt my sanity. Potter

Well. I have had as I know now – MS symptoms (loss of vision, loss of sensation, ms hug) going on and off for 5 years, and all this time I was told “there is no demielinating disease”. I have it written in clear bold black ink on my first MRI scan conclusion – demielination of right optic nerve, single active brain lesion, NO signs of demielinating disease (signs of what that is then?!). And they refused to send me to MRI ever since, it was driving me mad and yes, I was very, very disappointed that my condition is not defined and also not treated, and I really was wishing it would be MS. Because then I could get it monitored and controlled.
Then I moved to Netherlands, and doctor was bright enough to send me to spinal cord MRI. Off we go – 3 spinal lesions, 3 brain lesions, both optic nerves affected. Nice over time progress. Now I have my MS diagnosis and also treatment, and I am happy that I have MS, a condition that can be controlled and modified. When there is no diagnosis, there is no control, there is nothing you can do about your condition. It is all about certainty and peace of mind.

1 year ago


There is a fine line between wanting it to be diagnosed as MS so that there is a reason for all the weirdness going on that can be attacked and if not vanquished at least put back in it’s box for a while, but not actually ‘wanting to have MS’ – like it’s a level in a game ‘Callenge Completed you now have disability level 1 with MS muiltiplier for extra bonus’s’ – well that’s just wrong in every way, but sometimes people can and do sound like that’s what they’re wishing for.

During and after diagnosis it is common for changes in mood and how we feel about things, other people, life in general.

I described my diagnosis as the complete and utter failure of my ‘fuckwittery filter’ (okay it had started failing in 2012 when my husband was in Afghanistan for 6 months with the army on tour and I’d see ‘ohh my boyfriend is out for the night I’m so lonely I miss him so much’ on facebook which made me want to hit said people with a bat …. perhaps one with nails in it).

I digress … where was I – oh yes the intollerence – where did my empathy go thing ….

POOF – it dissapeared

There’s a whole load of certainty in this life, go out drinking, stay up late you’re going to feel crappy, exhaused and ill and it’s not going to do you much good …… but you brought it on yourself – you worked really hard for it and I have no sympathy or empathy at all for that …. Live on pizza, chips, wine and beer and constantly got colds and pick up every bug going ?? …… well eat some bloody fruit and vegetables, drink some water, have some early nights and stop bringing this on yourself …..

That ‘choice’ was taken away from me with the diagnosis, I can eat my fruit and green, I can drink water and sleep 8 hours every night, but that waking up feeling crappy and exhausted and like I’ve not slept at all and my head feel like someone dumped a can of soup in it ……

Don’t ‘THEY’ know how bloody lucky they are ?

You know the ‘Normal ones’ …….

Yeah empathy failure, tollerence failure, sympathy failure, just generally quite angry really …. even typing this I still feel that little niggle – the desire to find that bat and go all HULK SMASH on something but quite honestly I’m saving that energy for more productive things.

What I can say from my own experience is that as time passed, as I learnt about the advances in treating MS, that as I learnt that progression can be stopped now, and not just slowed down, as I chose the treatment I wanted and fought back against the MonSter my relationship with it changed and became something that I’m actually really very proud of.

It takes a special kind of tough to not just ‘get through’ the day but storm the tower, rescue the prince, save the world and still put dinner on the table do a load of laundry, walk the dogs and work full time.

With the newer treatments available today the future can be one of hope and positivity, grab onto that and hold on for all you’re worth.

You have a friend request, if you need someone to talk to please PM me, I’m happy to share contact details xxx

1 year ago

I am one of them that is waiting for a diagnoses. My brain MRI results show demyelinating disease. I’m waiting for the results of my spine MRI and neurological vision test. I do not want a disease or anything I just want answers and a “magic pill” to make symptoms go away. I have an appointment with my neurologist in a month. Its frustrating to wait so long for answers but I have to think there are people who are worse off than me. For instance, my friends’ 10 year old daughter has an abscess on her brain she already had 2 operations and still has to undergo a more abrasive operation next week.

1 year ago

I was so relieved when I was diagnosed. I’d been struggling for months, struggling so much juggling work and home life and just felt like I was failing for no reason. I was scared of what else it could be, yeh brain tumour was on my mind, I got to the point where I was 100% sure for about a month before I was diagnosed that it was MS. I was desperate for the diagnosis so the anxiety would stop and I could do something about it and get treatment and have a reason to tell work about why I’d been so ill etc. I certainly didn’t want MS but couldn’t have lived in limbo much longer than I did.

1 year ago

People in this situation are having difficulties and are searching for a diagnosis. Many symptoms of MS are also present in far worse illnesses – Motor Neurone Disease and Muscular Dystrophy for example – MS is definitely preferable to those!!! The time between symptom onset and diagnosis is very stressful, I can understand their desperation for a diagnosis

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