So I started this whole journey about a year ago when I went my GP with numb feet and lower legs. Since then I’ve had all the tests that you’ve all had, the blood tests for just about everything under the sun, the MRIs (almost fell asleep in those), the lumber puncture (don’t want another one of those, thank you very much). All these tests have come back with indicating MS. Even I could tell that the big white dot in the middle of my head probably shouldn’t be there. I was even given a fairly hefty does of steroids so I’m being treated as if I have MS. I’ve not started the steroids though what with “everything else that is going on at the moment”. So why can’t I seem to get across that line to diagnosis.
I spoke to the neurologist today and the second MRI didn’t show any additional lesions (yay) so it’s still listed as possible MS and the uncertainty is frankly doing my head in. Don’t get me wrong I’d much rather not have MS at all, and from what I’ve heard getting this far along in a relatively short space of time is fairly rapid, but with all the tests pointing more and more to that diagnosis as everything else has been ruled out I just want to be able to have the label for the symptoms confirmed and move onto the next step, whatever that is.
I pretty much recognise your journey so far, and I understand your frustration; sticking a label on it, whatever it says, is so much better then being in limbo. The problem is there’s The McDonald Diagnostic Criteria to satisfy before you can receive a definite diagnosis. Due to this you’re not likely to be diagnosed without clinical evidence of progression. [excuse me if your neuro has already explained this].
Ben is quite right, the neurologist has to follow the McDonald Criteria and a formal MS diagnosis can’t be made without evidence of ‘dissemination in time and place’ according to the criteria.
What the neurologist could do of course is diagnose you with a ‘Clinically Isolated Syndrome’ or CIS. (See https://www.mstrust.org.uk/a-z/clinically-isolated-syndrome-cis ) The benefit for being diagnosed with CIS is access to some disease modifying drugs, although only Avonex, Rebif, Extavia or Copaxone (see https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid for more info). The problem with these drugs is that they’re old and not terribly effective at reducing relapses. Although any DMD is better than none, many think!
It is truly frustrating, being pretty much certain that you have experienced an MS attack on your nerves but without it actually being diagnosed. I feel your pain and sheer annoyance.
For so many people in your shoes, an MS diagnosis is better than not. At least then you should be able to get your hands on some more effective drugs to halt relapses and disability progression.
I do however think you are probably right in these Covid19 days, to do without steroids. If your relapse was still in it’s early days, steroids would be more useful, but if (as I assume) it started weeks or months back, steroids may not help with the symptoms. Steroids would also depress your immune system, leaving you more at risk of CV19.
I hope you get some answers soon, or failing that, a really long gap between MS type attacks. Or of course, no more at all. Wouldn’t that be nice?
Yeah I’ve been through that Criteria in the past. I’ve certainly got at two lesions disseminated in space, spine and brain, and given other symptoms possibly one other in the optic nerve. The tests for Oligloconal bands in the cerebrospinal fluid came back positive too. I just don’t have confirmation of them being disseminated in time. They could concurrent or consecutive, no way to know. My GP also let it slip that the neurologist would suspect progressive MS, not sure if she was supposed to say that, which would again make sense given my age and the fact that these symptoms have been hanging around for about a year. Having been through all these tests, having everything else eliminated, ticking all but one box, it would be good to move onto “the next bit”.
On the plus side I don’t fall over as often as I did and I don’t feel bad about not running anymore. Always hated running.
So a bit of an update, which to be fair is probably more my need to write something than anything else, as I’ve had more tests and sarcoidosis has been ruled out. To be fair I never thought I had that as I didn’t have the most of the typical symptoms of that so I’ve moved to “Probable RRMS”. Given everything that is going on I don’t see that changing for quite some time but as I’ve now been referred to the MS nurse I’m going to take it as confirmation.
So that was 5 months ago and time for an update for those who are interested (yes I know that that is basically no-one ). After more MRIs, and slight diversion down a path that it might be Devic’s rather than MS, I’ve finally got my diagnosis that it is MS and I should be starting on DMT in the next few weeks once the prescription gets sorted.
Progress has been made and it’s time to start looking forward.