Morning guys, well I saw my neurologist yesterday after 3 years. He greeted me with my Christian name (very impressed) and seemed really pleased to see me. I have to say cough cough I feel I have faired better then he has lol. He looked really tired and drawn. He said his kids were driving him mad always bickering lol. I have been with him since one of them was born so he must be 10ish now that golden age.
Anywoo I told him about the loss of my husband. He then went on to say the MS nurse had asked him to see me with the view of perhaps starting Ocrevus. Now he said it comes with very strict criteria before you can even decide. One of them being progression, so would need all sorts of new tests and no guarantees after all that i would go on it. There is no real age limit to it anymore but like he said it was felt that it was less likely to work the older you were. I am 68 in 2 weeks.
There are other strict criteria too with regard to disability status. There are no guarantees if i was accepted it would do anything either.
I had already read up about it. He gave me some stuff to read, and wants me to just take time over it and when i have decided to ring him and let him know so he can get things set in motion.
Then we talked about pain meds. He did mention sativex but said the trails of it are not coming back from conclusive, the people on the placebo seemed to fair better then the ones on the sativex which is not very encouraging. I talked to him about cbd oil, but he said unfortunately there doesnt seem much about its affects as not many people are reporting back about it.
I told him I was coping really well at the moment had made peace with myself and my illness and was doing my own thing which at the moment seemed to be holding back the tide it was just really the pain i was struggling with at times especially with the heat and my ongoing bladder issue which i have an appointment to see urologist in august.
Anyway I was in there ages and we had a really lovely chat and I am staying on his books.
So anyone on here on ocrevus either with RRMS or PPMS and any feedback. I was worried about the auto immune attack as it seems it can trigger quite a few not so nice things, and at the moment for the last years I have loved and cosseted my immune system and looked after it and it has rewarded me, with very few if not non really colds etc.
I am not sure I will benefit from this drug now. Do i really need to rock the boat to try it? I dont know. I wish hubby was alive he would have talked me through it. My daughters are not sure either.
I know everyone has different reactions to drugs etc i just want a general over view of the drug and its affects etc.
Stay well all of you, he said there is a lot of research going on at the amount with MS which is encouraging.