Pre-appointment
I’m in the car on way to hospital, and no I’m not driving, that would certainly be cause for a few of the Vs if as per a previous blog. Neilly and I are on our way, despite having confused Southampton distance for Portsmouth, Great South Run hour journey and mass queues, rather than half an hour to Southampton and quiet roads, so we’re set to be 1.5 hours early (I hate being early!). My fault - I’ll take that - I don’t know why but I’ve very rarely been south on the M3 other than for the GSR, so automatically had that time in my head!
Anyway we’ll be on time, shame there are no coffee shops open for breakfast!
Sleep
Having said that my sleep was getting better, last night it was dreadful. Gave up at 4.30, got up and had tea and read a mindless novel. The Running Man, Gilbert Tuhabonye, was definitely too hardcore for me this morning, and TBH it is at the best of times, sad and inspiring though!
Post-appointment
Now home contemplating.
So, at my initial appointment the neurologist had diagnosed me with Primary Progressive MS, a rarer form with only one drug legalised in the UK last year. However this morning, after a multitude of questions, re examining of the scans and notes and some physical tests, the doctor advised that he would not like to label my MS as just Primary and I had definite signs of Relapsing Remitting MS, a more common type. This is better news, as more research and drugs have been done and available for this form.
He asked whether I would rather the “harder core” type available? Whether he used that phrase, probably not, but that’s what I remember, and that’s of course what I said I definitely would be interested in. Given the current pandemic there is a ban on certain types, as they massively affect your immune system, which includes the original one we were hoping for Ocrevus https://www.nationalmssociety.org/Treating-MS/Medications/Ocrevus however he did say there was one that I could potentially get authority for, and he thinks he could convince the panel who also need to approve it in the meeting he had this afternoon.
This one is called Tysabri:
https://www.nationalmssociety.org/Treating-MS/Medications/Tysabri-®
Tysabri® is a laboratory-produced monoclonal antibody. It is designed to hamper movement of potentially damaging immune cells from the bloodstream, across the “blood-brain barrier” into the brain and spinal cord.
I had to sign my life away, and understand the this type of medication can cause PML - a condition which he said “you definitely don’t want to get” no cure and probably death, however will do a couple of tests for certain cells beforehand, which will show my chances of getting - hopefully it’s a 1 in 1500 - which will be a good enough odd for me I think!
Anyway, I don’t want to think about the negative quite yet, am happy there is a drug I can take that can massively stop progression and hopefully improve symptoms somewhat. He said probably won’t make better than now, but should stop getting worse. It is taken by infusion, once a month back in Southampton Hospital. He advised a nurse should get in touch with me within a couple of weeks, just given current situation bear with.
So we left quite positive today.
In regards to visiting the hospital, it wasn’t quite as traumatic as I expected, found a car space easily and the hospital itself seemed relatively quiet. Masks on (and I can’t say I relish the mask wearing experience), a short walk and we were pretty much the only ones in the neurological department, seats all 2 metres apart, but we were in on time and back home by 11am.
Thanks to my ever supportive husband for taking me and to you all for your well wishes, it’s really appreciated and we will beat this bloody disease. FMS :)
Have a great weekend, don’t go too far, stay safe and do a puzzle!
Han xx
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