MRI Results - Update and Meds

This is a re-post from my old blog. Originally posted June 11th 2020

Well I said I'd post an update once I'd had my appointment, so here I am.

Had a talk with my nurse today and we agreed I'd start on a new treatment... well, assuming the tests and stuff they need to do first all come back fine. She's going to call tomorrow to sort out when I need to go in for a blood test and then we'll see what the results are.

Assuming the tests do come back fine I'd be starting on Ocrevus, which is an infusion given every 6 months - although the first treatment is given in two half doses a couple of weeks apart. The first two will probably take around 4-5 hours total each, including pre-treatment (to try and minimise infusion reactions) and monitoring time afterwards. After that the full doses will take around 6 hours total... 6 hours every 6 months isn't too bad.
I'm hoping I won't react too badly to it, because there are a lot of common infusion reactions that could make it rather unpleasant, but my nurse says it's pretty well tolerated by most people; so let's hope I'm most people!
If I do react to the infusion I'd likely be in there a fair bit longer, since they slow it down to try and minimise the reaction, give other stuff to help counter it if needed and would then probably want to monitor me longer.

And of course there are a bunch of risks afterwards for various things that can develop and that I'll be more susceptible to, although a lot of them are similar to the risks of my current meds so it's not much different. It is rather stressful to have to sit there and hear her go through the whole list though. I mean, I'd been sent the information beforehand so knew about it already, but it's more worrying somehow when you have someone telling it to your face. Heh.
Well that might just be, at least in part, due to my social phobia which makes any such appointments very difficult even if they're only for good things. Talking with anyone is very stressful. xD So yeah, it did leave me feeling worn out and stressed but I'm happy enough with the outcome and hope that it will stop any new disease activity. Because right now my brain is not looking so happy and while it's not given me much trouble so far the damage may cause issues down the line and if it keeps happening it could be very bad. So yeah, definitely need the med change as my current ones weren't doing enough it seems.

One symptom I do seem to have picked up is tinnitus, which is a bit annoying although not too bad. Mostly it's a pretty quiet, tv static kind of noise, somewhat similar to rain. I think this has been going on a while without me realising at first because I often thought I could hear rain out the window the past month or two but when I looked it wasn't raining. I only became aware of it recently when I put on a pair of headphones that block out other sounds and it made it sound much clearer and louder. I thought it was the headphones making the noise but then when I took them off I could still hear it. And of course once I did notice it, I'm now noticing it's there all the time.
Although as it is usually quiet (it does vary a bit I noticed and is usually louder if I'm tired) the sound of the TV or radio or talking etc... usually help to mask it.
My nurse said they can't do anything to treat it currently unless it was to get worse, since the usual treatment is steroids and they're restricted at the moment due to the coronavirus. Hopefully it won't get any worse and will just fade in time, but we shall see.

So yeah, that is my update. I'm feeling in a better mood then when I last posted. So now I'll just wait for my appointments and then the results and see what happens.
I'm not sure exactly when I'll be starting on ocrevus but if all goes well I don't think it'll be too long.


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