Hi,
I can relate to some extent, as I was not having daily problems with routine activities, like you, but I was having increasing unexplained pain in feet/legs, and was referred to Rheumatology at least five or six years before being diagnosed with MS.
I at first saw a very bright, proactive young rheumatologist, who was absolutely convinced something was wrong, although rheumatology screening showed nothing. He believed it could be sero-negative rheumatoid arthritis (RA that does NOT show in the blood), and was absolutely determined to get to the bottom of it, so did not discharge me, and put me down for a six-month review.
I turned up for the review, feeling confident I was in the care of somebody so determined, and that together, we were going to find out what was wrong.
To my horror, I discovered he’d resigned and gone back to Ireland! Instead, I got a much older and unknown (to me) rheumatologist, who completely dismissed the suspicions of his predecessor, diagnosed me with “wear and tear” (“unfortunate, at your age, but it does happen”), and discharged me with advice to rest and take ibuprofen.
This is where I can relate to being told: “It’s just how you are now”.
So I came away saddened that I was - seemingly - not ageing as well most people my age, but also relieved, because I felt that if it was anything sinister, they would have found it.
So I did my best to put up and shut up. Roll on five or six years, and I wake up with completely numb feet and pubic region.
At that point, I got referred to Neurosurgery for a suspected slipped disc. MRI showed no slipped disc, but a very eagle-eyed neurosurgeon was just about to discharge me too, when he took one last look at the scan, and spotted something he wasn’t happy with.
I think he knew from that moment it was an MS lesion, but didn’t tell me, because it was not his field, and wouldn’t have been appropriate.
Instead, he referred me to an MS specialist.
The difference from you is that, because of the earlier Rheumatoid Arthritis red herring, MS had never even crossed my mind at all, although I had suspected I was eventually going to be diagnosed with RA.
With hindsight, I cannot blame my GP for sending me first to Rheumatology, because there can, surprisingly, be quite a lot of overlap between that and Neurology, so it was an entirely reasonable first guess. With being told it was just “wear and tear”, I had no real reason to be suspicious for the next five years, and accepted “wear and tear” as a depressing but true diagnosis.
So I would say that whether you end up in the right department to begin with is largely a matter of chance. If Neurology did not see anything that concerned them (just as Rheumatology didn’t, with me), I wonder if you might have better luck with Rheumatology? Has your GP suggested referral to any other discipline?
These conditions with numerous but non-specific symptoms (i.e. symptoms not attached to any one disease) can be very hard to diagnose, and sometimes, even hard to find yourself in the right department!
I think one fault of the NHS is they do not think “outside the box” - to use a horrible, American piece of business jargon.
Each consultant seems only to ask themselves: “Is there evidence of the thing I look after?”, and, if there isn’t, to be too quick to say nothing’s wrong, and not consider whether the answers may be found in a different department. In that respect, I think I was very lucky not to be discharged by the neurosurgeon too, because he was only really looking for a slipped disc, and didn’t see one, so…
It was really only luck, or a sixth sense or something, that made him say: “Wait! There’s something I’m not happy with.”
I was almost out the door before he said that, so I could have gone home still with the “wear and tear” label.
Tina
x
Thanks Tina,