I’ve developed 16 lesions (15 brain, 1 spine) in last 10 months despite tysabri. Diagnosed 10 months ago. This seems a huge amount. Is it?
How many lesions if you get progression have people shown?
I need to decide whether to have ocrevus, kesimpta or lemtrada. Or whether to have a stem cell transplant. It’s hard and my neurologist feels unable to advise me. A transplant feels enormous I’m scared of it but also this disease
If my neurologist made HSCT available to me, I would think it reasonable to draw some inferences from that. Frankly, I would be inclined to hear that as close to a recommendation in terms of how bad he/she thought my MS’s intentions were. As I understand it, HSCT is a treatment offered when a person’s MS clearly means business and the standard drugs, even the heavy hitters like natalizumab aren’t cutting it. There’s good info about it on the main part of this MS Society site, but I dare say you have info coming out of your ears.
In your shoes, I would want to be sure that my neurologist understood that I was determined to do all I could to protect myself, and wasn’t averse to taking on a bit of extra risk to achieve that. I dare say your neurologist and you have talked about risks and benefits, but some of them can (I think) be timid about assuming where the patient’s priorities lie without a clear steer from the patient. Apologies if you’re been round the houses before with your neurologist on this one.
I am very sorry that you are in this situation. I do not know about lesion load, having been told ‘about the number you would expect’ on the one occasion I asked how many I had. My guess is that any number greater than zero is bad.
Hi @jmr . Not sure I can add much to what @alison100 says . I did look at stem cell treatment when it became available but in those days and probably now, it wasn’t offered to people over a certain age so I wasn’t eligible. It does look scary but people take it and it does seem to be good - but , as I’m sure you will, do plenty of research first I’m not sure but is there a site where folk share their experiences?
I’ve no idea about the three drugs and if you go down that route just go for the one that on paper is most effective.
Believe it or not, I’ve never been brave enough to ask how many lesions I have and know only that ‘it’s quite a few’
I am absolutely terrified
The other drugs are
Hi,
On the lesion load issue, my last scan report said that I had so many brain lesions the radiologist found it hard to tell whether any were new or not. He made it sound like I had more lesions than brain. Prior that that I think I had “at least 30” (they stopped counting…?!). For what it’s worth, so far - so far - I have near zero symptoms. It is also true that my scans have been marked as “stable” throughout.
The DMTs you mention (and the stem cell option) are all quite big hitters. There is or was a trial ongoing to test stem cell transplants against alternative DMTs - you might want to look that up if you haven’t already. I’m not sure if it’s reported.
One thing I would think about is time. I got the impression that it’s good to start treatment fairly promptly after diagnosis - right now I presume you are not on any DMT. Starting it will take a bit of time, you’ll need things like blood tests, perhaps vaccinations, and there can be a bit of a waiting list. If you do start one and it’s not good enough, presumably you can still switch. But perhaps it’s best not to spend too long umming and ahing… I have no medical knowledge though. You might try contacting an MS nurse to discuss options if possible. There are also the MS Selfie Info Cards (searchable online) - provide quite useful summaries and links to product leaflets.
Blimey, there seems to be some big numbers being put out here 
Maybe that’s normal 
. And just sounds like a lot due to my relative lack of knowledge on this subject.
For what it’s worth - at the moment I believe that I have no spine lesions. 1 on my frontal lobe, a big one going from my occipital lobe to my Parietal lobe and, a bit of demyelination.
My consultant influenced me a little with my choice of DMT but, he was clear that it should be my decision. I should be starting Kesimpta in 2 or 3 months.