Hi everyone Hope your as well as can be. So I saw my neurologist yesterday. She really is lovely. She did a thorough examination commented that my reflexes were difficult to find which is pretty normal since this whole nightmare began. Then proceeded to prick me with a pin all over. And said I have altered sensation all over. I’m not numb I know when I am touched it may feel a little different but know it’s there. Also my fingers belly some pRts of my leg didn’t know was a pin I was being touched with and my legs some bits I knew some I didn’t. Checked my strength we know there weakness from previous relapses. Anyway my MRI with dye spine and brain is back. The spine is clear apart from a grey area which they don’t even think is a leison. So that was some good news. The brain has some new leisons but they are not showing active at present Anyone want to give me some info on that? Will they become active. I know it’s how long is a piece of string So she said I’m a hard one the relapses I has last year are enough to warrant tysabri and there wouldn’t be a problem prescribing it. She says extavia maybe is working as leisons aren’t active. Maybe you can help she said she would have a low threshold to changing me to tysabri? What did she mean by that Said obviously greater risks with it and that. Don’t need to make mind up yet. But she said when your in ill do full bloods and test for jv virus. So results 4-6 weeks. She said when it’s new can be highly active and maybe mines has started to calm down naturally the worst is over. She’s like we are taking this serious. And one more huge relapse and would have to change. So now I’m just confused. My thoughts are with 2 so small kids I don’t think I can afford another huge relapse I always recover partially what will another one do. Or do you stick with injections and hope they are enough for a while This ms business is just a nightmare Em x
Hi Em,
A lot of questions, so I’m not sure I can take them all.
I’ll try a couple that jump out at me.
Generally speaking, inactive lesions are old ones - not future ones. I say “generally”, because I do think old lesions sometimes flare up again, but relapses are mostly caused by new lesions, unrelated to the old, inactive ones.
When she says she has a “low threshold” for prescribing, she just means she has a readiness or willingness to prescribe, especially where the case for it is borderline. A neuro with a “high threshold”, on the other hand, would be one who is reluctant to prescribe, except as a last resort. The neuro I’ve seen the past couple of times describes himself as having a low threshold for DMDs generally - which just means he’s a ready prescriber. Obviously, as well as patients having different attitudes to risk, so do neuros. Some will need a stronger case than others before suggesting a patient moves up the risk scale. Some neuros will lean more towards early aggressive treatment, others will lean more towards minimising potential risks or side effects. Neither approach is right or wrong, as the whole thing’s a compromise, but obviously it helps to have a neuro who is broadly in sympathy with your own attitude to risk.
Your neuro sounds very kind and understanding, so although it sounds as if she would prescribe Tysabri for you at the drop of a hat if you wanted it, she has made you aware this is a higher risk option, and at the moment, is not pressing you.
Although I’m not on any DMDs at the moment, I’ve had a very similar conversation with the neuro recently. They are gradually coming round to my view I probably had MS quite a long time (years!) before being diagnosed, as I’ve been able to remember and explain more and more things that happened, that I’d ignored at the time. So we have also had the conversation that I may have passed peak relapse activity.
In my case, it’s not a choice between a firstline DMD and a secondline (like Tysabri), but between a DMD and not. However, the considerations are pretty much the same: How active is it now? How active has it been? How likely is it that it has calmed down naturally, and my relapse risk is already lower?
Even right down to the risks discussion: “Obviously, if I were to put you on anything, I’d have to counsel you about risks and side effects”
So whether it’s considering a DMD for the first time, or considering a move to a more powerful one, the arguments for/against tend to be pretty similar.
I’m sorry I can’t tell you what you should do. The way forward might be clearer when you get the results of the JC virus test - clearer to your neuro, as well as you.
I’m guessing if it comes back clear she will be quite keen to switch you - not so much if it tests positive.
Tina
x
Thanks Tina. Yeah might be clearer once the results are back. I don’t know just have to wait and see. I just want to stay as well as I can. My son wAa with me to my appointment and when my neuro got me to walk outside the room he was worried she was going to keep me as the examination was where I had my hospital stay the last time. Em. X
hi em
just want to say good luck with your decision.
i know people who are on tysabri - some feel great but one lady feels rubbish all the time.
hope you are one who fees great.
carole x
Hi em My neuro is great, reality pro active , with a low threshold , I went straight on tysabri as he’s a firm believer the quicker you start to fight ms the less damage , which I’m more than happy with, I love the thought I’m fighting back Take care Gray