Forum

HOW OFTEN DO YOU GUYS/GIRLS

GET ur Mris done. Ive got one in october.

Hi Nazra,

It’s not to a set schedule - it depends when or if you need one.

During the early days of investigations, I was scanned several times (about three, I think), but that was because all they’d suspected initially was a slipped disc, so they only scanned my spine. That scan didn’t show any slipped disc, but did show a “suspicious area”, so they wanted to scan again, to take a closer look (and make sure it was not caused by some kind of fault on the original scan).

So they scanned again, and it was definitely still there - meant it couldn’t have been a scanning quirk.

At that point, they decided to look in my brain as well, so another scan ordered of everything - both with and without contrast. This was the longest scan I had - about 45 or 50 minutes. And guess what, they found six lesions in my brain, as well.

So then I was in pretty much the same situation you’re in now - something not right, but insufficient evidence it’s definitely MS (could have been CIS). I was booked in for another scan with six month separation - enough time to see if anything new had developed. The second scan found new lesions. I was never told exactly how many - I suspect because it would have scared me witless. I was told: “A few, but not too bad…” I’m sure they would have told me if I’d asked, but I had a feeling I wouldn’t really like to know how many “a few” was, so I was content to leave it vague.

The appearance of new lesions meant they could now be satisfied it wasn’t a one-off incident, and I went on to be diagnosed.

Since then, no MRIs at all, and I don’t want any. The number of lesions has very little bearing on the extent of any disability (you can have loads, but still be functioning relatively normally, or just one in a crucial place, and be very poorly indeed). So it’s really not very informative to keep a continuous running count. Usually, the only reason for scanning after diagnosis is to check if a particular treatment is working (has reduced lesion activity), or if the patient is being considered for a new treatment. Some of the newer, more powerful DMDs also have a worse risk profile, so they require a scan to confirm the disease is aggressive enough for the higher risk to be justified. You don’t want to give higher risk stuff to someone whose disease really isn’t very active anyway.

Tina

Once I get a diagnosis…one way or the other. I dont want anymore scans…just to get on with my life. Noreen x

Same as noreen, I have one on Sunday and if it shows a diagnosis then I wouldn’t see the point in having any others Mick