Is anyone else angry? (newbie here)

Newbie here, my first post.

I’ve woken up today just so pissed off and angry.

I had my first neurologist appointment yesterday due to having numbness and tingling all down my left side for 5 weeks in May, got a full spine MRI end of June which came back with multiple lesions. So yesterday after delving into my history, the neurologist told me it is most likely that I have MS based on that and some previous incidents, and that I have most probably had it for 20 to 30 YEARS!!!

He said he just has to check some other tests (urgent brain & spine MRI with contrast and a slew of blood tests) but that he feels the outcome will be MS.

I’m 54, female and have had the same Doctor for the last 19 years. I’m so angry because the neurologist opened my eyes to my years of fatigue NOT being down to my underactive Thyroid, nor the menopause, nor my weight, as my family Doctor has constantly blamed it on! Nor was my numerous episodes of pins and needles and joint pain due to my Thyroid or Ulnar Nerve as I was told. And as the neurologist kept referring to ‘inflammation’ in my spine, I woke up reminded of the numerous times my past blood tests showed ‘inflammation’ and my Doctor just batted it away and said ‘many things can cause inflammation, it’s nothing to worry about’

I’m just so angry today. Could the past 20-30 years have been so much better for me as a single parent raising 2 kids alone with constant fatigue and pain, if only I’d had a Doctor who gave a damn to see the signs?

I know exactly where you are coming from. I’ve got my first MRI ever (brain and spine with contrast), in a couple of weeks, despite 42 years since typical MS neurological symptoms began. (Long story for another day.) 12 years ago I was diagnosed with cervical dystonia, and they presumed it was just idiopathic so didn’t bother then to do an MRI, though it is now beginning to look as if it is secondary to MS.

20 years ago MRIs were not routine, had only just been invented and charities were busy saving up to buy them to be put in hospitals. Waiting lists were years long. Lumber puncture was the only reliable sort of test. There was also an attitude 30-40 years ago that women with neurological issues were mostly just neurotic, and only those with the most classic presentation would be taken seriously. Many had the ‘hysterical’ or ‘hypochondriac’ label applied, which then meant they were then for years bashing their head against a medical brick wall, not just with neurological symptoms, but any condition. There was no treatment anyway. All you had was a label, if you were diagnosed, and then pretty much left to get on with it. A label which would make car insurance more expensive, questions over your driving licence, employers likely to run a mile etc, etc.

Now, would you have been better off knowing? Would I have been better off knowing?

By comparison with others, my journey has been pretty mild. It has messed up my career, big time. Label or no label, it wouldn’t have made much difference. I doubt the job centre would have been any different in my periods of unemployment, would have been treated just as badly.

However I’ve been fortunate, until just recently, as remissions took me almost back to normal each time. Would take weeks and months though - hence employers making me redundant. Deficits had been minor until recently. I’ve got used to having permanent pins and needles and other sensations, compromised balance etc. As I have long suspected MS I’ve lived a healthy lifestyle, tried to ensure good sleep, keep stress levels down, to try to keep myself in the best shape possible, but not wrapped myself in cotton wool.

That your GP did have a label for your fatigue etc (thyroid) at least meant it was not dismissed as non-existent, even if the actual attributed cause was wrong!

If you had known you had MS, would you have had your children? Would you have done things differently?

You have missed out on having DMDs in the more recent years, which might have meant you’d be in slightly better shape physically than now.

My feeling is that in mild, or slowly progressive cases, not knowing might be an advantage for some people. It very much depends on the character of the person. Two friends have MS, both very mild, and still doing extremely well after many years (now 70 and 62). One did not modify his behaviour, except for adapting a healthier life style, and it did not stop him doing things he wanted to do. He never had meds. The other was more cautious about things than she might have been. She allowed the label to somewhat define her, and was always chasing research trials, despite hers being very mild.

Allow yourself to feel angry for a short while, then let yourself move on. Don’t let it eat you! You can’t change the past. Just hope that you will be properly supported by your doctors from now on.

1 Like

No wonder you are so annoyed…all those pointers to a serious condition…we dont question our GPs, but we really should.

Who knows, maybe you could`ve had some DMD treatments to slow progression.

I battled to get a diagnosis too…it took 22 years!

But I know my PPMS couldnt have been halted, as I was in a wheelchair very quickly.


I was very lucky to have had an amazing GP when my symptoms began in 2008.

He took everything i said seriously which really mattered as I felt like a fake as my colleagues and my boss thought I was.

Lovely Dr Chan referred me to neurology straight away. He had been interested in neurology but sadly didn’t choose it as his specialism.

The neuro he referred me to is also wonderful, but sadly specialises in epilepsy so had to pass me to a MS consultant.

I cannot fault my doctors or the treatment I received

Carole xx

Thank you all for your replies. I’m sorry it took me a while to reply, I fell down an MS rabbit hole when I was told I’ve probably got it and of course I ended up ‘doom scrolling’, as my daughter calls it, and I got myself even more upset so I had to stay away from the Internet for a while! Until this year I had just accepted that my issues were caused by other things like my underactive thyroid and the menopause, I had never even considered MS so this came as a shock to me.

I think I’m slowly getting a handle on things now though, an acceptance has crept in to replace the initial shock and anger. Thank you Ziola for those wise word, I can’t change the past and being angry just won’t help me going forward. I’d rather take the road of your first friend who tries to not let it stop him doing what he wants to do, rather than your second friend, who lets it define her. I’ve only recently become an ‘empty nester’ as my youngest has left home this year and I had so many plans to ‘start living for me’ for the first time in a long time, so I’m going to try my hardest to keep those plans. 2020 has already put too many dreams and plans on hold, I’m going to try not to let MS do that to me too.

I’ve had my blood tests and got the results, though a couple of the antibody tests are still pending, everything else is normal, except for High reactive C protein and also High red blood count. I also had my second MRI on Friday (Brain & Cervical with & without contrast) and I have an appointment to see the neurologist again early December, so even though I’ve worried and waited since May, with the episode that brought me to this, I am hopeful (covid allowing) that I will have a definitive diagnosis before this dreadful year is out and then I am looking forward to moving forward and finding things to look forward to.

I’m hoping everyone else on here can find something to look forward to too xx

Good to hear back from you. Glad to hear you’ve emerged from the rabbit hole and now starting to move forward again. Your neurologist seems to be moving fairly quickly (well, tortoise pace rather than snail’s pace - do any neurologists ever move quickly?), what with your recent MRI and a follow up appointment not too many weeks away.

You had your MRI scan the same week as me - we probably got in there just in time before hospitals start getting overwhelmed again. I live in North Yorkshire though currently being seen at Newcastle, so in the ‘hot Covid’ zone, though thankfully my local area currently has a low infection rate. Fingers crossed you get a definitive diagnosis before Christmas.

I haven’t heard the term ‘doom scrolling’ before - I’ll remember that one! As the course of MS is so different for different people, the internet won’t help anyone recently diagnosed to determine how their own future will pan out - though that is obviously the thing people will want to know, (well, diagnosis first of course)! And certainly not the place to look if wanting to self-diagnose, for those with health anxiety. However it is a fabulous tool when used to gather information to be pro-active with our health. I’d be lost without it.

I too am hoping I might get a diagnosis before Christmas. 30 + years for you, 40+ years for me. I think we’ve been more than patient!

Take care.

Good luck with your diagnosis too, I do hope you get some answers this year. Reading your experience and your long fight for answers I am in awe of your calm words and patience! Where in North Yorkshire are you? I’m a South Yorkshire Girl, born & bred, ‘accidentally’ living in Essex for the last 20 years! I miss the North sooooooo much!