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.