MS not MS?
I've had "possible MS" for about 4 years (although the symptoms that made the docs say that have been going on for about 3 decades). And they found some lesions on my spinal cord when they did an MRI of my lower back and pelvis which made them say that.
And recently symptoms got much much worse. But no lesions on brain MRI so consultant said MS unlikely.
Helpful physio has said he can't see it could be anything other than MS.
Am deeply confused. And in need of support. Not sure quite where to turn.
Seeing consultant tomorrow morning.
Not brilliant at dealing with these appointments.
Have made a list of what's been going on but it all seems so vague. Not sure what happens when I can't walk or why I should be able to walk so effortlessly when I can.
Can anyone offer some advice?
@zoereason , the following link explains what goes into an MS diagnosis, and why it can cause so much trouble :- https://www.mstrust.org.uk/about-ms/what-ms/how-ms-diagnosed Unfortunately, MRI Scans can give a picture of the brain and spine, they are not a comprehensive picture. The scans may not show all the lesions that exist. But, it is useful to understand what tests are available to the Consultant. We do talk about becoming our own advocates in getting the medical attention we need. In your case, this has been going on for four years and possibly decades beforehand. So, it's not unreasonable for you to ask for, even demand, a diagnosis. Or ask what steps should now be taken to discover the diagnosis. Do not allow yourself to be "fobbed off". Dig your heels in and get them to commit to a definite plan. After all, Consultants are Public Servants, so they are our workers! 😉
@stumbler Thank you - that's really helpful. Yes - asking them to commit to a definite plan sounds eminently reasonable!