I had an M.R.I. scan last week and got the results through and it shows I have over 15 demyelinating lesions on the brain and demyelinating plaques on the spinal cord. This is quite an increase since my last M.R.I four years ago. Really makes me worried about what will happen in the future. I do need a wheelchair when I go out and have bladder problems as well, fatigue is also a big problem.
so, I guess the lesions are active. The lesions are in the white matter. don’t
really know what that means. Any thoughts on this? Thanks.
First thought is that if your MS Consultant isn’t jumping into action at the sight of the MRI report, then you need to make a nuisance of yourself, pestering for a treatment plan. 4-yearly MRI’s is not adequate care.
I’m in a similar stage to you and am complaining about annual MRI’s being too infrequent. And I’m also pestering for a treatment plan. Your disease is clearly active if new lesions have been detected.
If you’re PPMS (you’ve posted in the PPMS section of the forum), you should be asking when (not if) you can start treatment with Ocrelizumab (Ocrevus) which is licenced for use on PPMS patients in UK now.
Hello
This may be very silly question but you seem to be somewhat of an expert on PPMS. Do you think most people have had prior symptoms before being diagnosed with PPMS or does PPMS come on overnight( possibly caused by virus?)
Hi Carol
I’m no expert, I just know enough about other people’s knowledge to know what to redistribute. Plus I have PPMS myself.
Progressive MS is particularly hard to spot.
I was misdiagnosed for 9 years because symptoms could be explained by something else, which ultimately turned out to be wrong. Hard to spot if disease propagation is not accompanied by fresh lesions or inflammation - in RRMS (more common), disease activity is identified by inflammation / demyelination.
I thought at first mine was a sports injury, then chronic back pain, then spinal stenosis, before an osteopath (not the consultant neurologist) suggested perhaps I needed an MRI. By the time of diagnosis, my disease was quite well advanced but although verified by MRI, progression doesn’t show up on subsequent MRI’s - “smouldering” MS.
Conversely, Greeneyes’ MRI feedback suggests significant progression when looking at MRI delta.
Thank you. I hope your progression slows. You seem to be a fighter. I haven’t had any other prior symptoms before 3/15/22 and then that began with swollen feet and then tingling which has not quit for almost 6 months. Headaches and numbness in hands. Inconclusive MRI and finally appt with neuro on the 19th. Still running my 3 miles 5x a week so maybe am a fighter too. Who knew I might be dealing with this at 73. Best of luck to you.
Like you I had a recent MRI and they found 2 new lesions I thought that was bad. The Nero did say he would look into what treatment would be suitable. You should do the same.
Hi, I`m not an expert but most of the lesions are in the white matter of the brain
if they were in the grey matter, I think things would be a lot worse.
I have 5 in the white matter and one on the brain stem.
Mine also said you have mild brain volume loss which means the brain has got smaller. Which I have been told is normal as we get older.
Good luck,
I will have my first scan since I was diagnosed with PPMS, trying to stay positive. Sorry to hear what you’re going green eyes, but you seem to have some good advice.
Hi Green Eyes, yes that does sound a lot of lesions and plaques, I actually had more than you. But I always try to be positive and live life the best I can. You must talk to your neurologist to see what can be done to help you.
Like you Green eye’s I hade an MRI scan that showed a few new lesions in the supratentorial white matter of the brain. And there are multiple demyelinating plaques at the cervical spine/ I have been told I have an annual NRI scan. What treatment they will give Don’t know will keep you posted.