MS in all its glory

Hey, public sector worker here. Working nights and shifts and everything else with my MS. In able to at the mo but that’s another story.

get onto occ health straight away. Tell them tou are finding wfh very beneficial and that you want to stay in that arrangement. They should be able to help you

Thanks for the replies. I'm not sure I meet the criteria, no new lesions on my last MRI's. ( good ).

My nurse called back to say bring it up with my neurologist, but I haven't seen him in years ( can't remember the last time I saw him)

Anyway I seem to tolerate Avonex well enough.

Hey, sorry to hear you got an MS diagnosis. It can be a lonely and difficult time in the early days. It's taken me a long time, but it does really help talking to others in the same boat. I was very resistant of that at the start. I had optic neuritis in October 2016 (I had other random unexplained symptoms for years before that). Sent for an MRI in November 16 and was told when I went to the Eye and Ear for the results it was more than likely MS but further tests were needed. Conclusive lumbar puncture and another MRI in Feb 2017 and was finally told in May 2017 in Vincent's that I had RRMS. Between my scan in Nov 16 and Feb 17 I had 5 new lesions. I was give 3 pamphlets about medications too and told to choose. I chose Gilenya as it was one pill a day and I thought the easiest option for me. I started Gilenya in August 2017. I had to go into the clinic for the day as they monitor your heart the first time you take it. I was fine and all stayed normal.

I took Gilenya for 3 years up to October 2020 and only came off it as we are trying for a baby. Gilenya worked well for me and my MRIs were stable during the 3 years. I also have chronic migraine and during that time they did worsen. Consultant said the Gilenya may have exacerbated it but I am still off it and get migraine but not as regularly so who knows.

When I stopped Gilenya I was given steroid infusions as you can have a rebound when coming off it. Personally, I had more issues with the steroids than Gilenya. I was told if I had a relapse or changes on an MRI they would give me Tysabari. However, I also tested positive for JCV. Consultant said I could take it for a very short time (while trying to conceive) and the risk would be smaller as I think the longer you are on it (especially if you are positive for JCV) the greater the risk. I don't really want to take Tysabari at all and hoping I can avoid that. Gilenya does also have a risk of PML but a lower risk I think. All in all Gilenya worked for me and I would go back on it again if I have to.

I suppose the thing to keep in mind is that you can possibly try something else if a medication doesn't suit you. It's best to go with your gut feeling at the moment about what's best for you. Best of luck with your decision.

*(On a side-note not sure if anyone has ever been to the Eye and Ear but in a consultation room near the Waiting Room there's this weird wooden chair/bench in the wall thing that I sat in when I was given my diagnosis. Its up there as one of my surrealist experiences ever. It's weird what sticks in your mind at times like that!)

im in the same boat. Dx in ‘12/13 ( when Marie Fleming was going to court ) but my mobility has gone downhill the last two/three years. MRI’s seem to be stable. I had planned on doing a bit of swimming/gym to get a bit of fitness but then Covid-19 hit. I think I was grabbing at a straw with Ocrevus in the hope of a fix , which I know it won’t do. Avonex seems to be doing the job and I’m well used to it so I’ll stick with it. Once a week so not too bad.

I won't quote a response to anyone in particular above, but thanks for the info folks. I made the decision to try Ocrevus. Just need to wait now for the admin to be done so I can start. Had steroid infusion a week ago and whereas when I also got steroids 6mths ago I didn't notice a positive difference (because my symptoms were so slight), this time around there's a measurable improvement, less wobbly gait etc. There's good and bad in that I suppose.

I do have some questions. Some things I couldn't get straight answers to from neuro/ms nurse.

Firstly, I was told that there's a good chance the DMT will prevent new lesions. Despite my MS being described as 'aggressive', I've not had a relapse (fingers crossed). Is there a chance that, if no new lesions form, I might never get a relapse or is that just wishful thinking?

Secondly, the efficacy of a drug is a measure of how good it is at doing it's job i.e. slowing/preventing disease progression. So it stops lesions. But the existing lesions, they don't go away. In that case is it to be expected that even now if symptoms are tolerable, there will more than likely be physical degradation,?

Appreciate that every one of us is different so I'm not expecting someone to map out a trajectory here, but go ahead.. what are your thoughts? Don't be afraid that I'll be distraught..I think I'm fairly together.

Sorry to hear that.

Got 3rd dose yesterday. Delighted.

Biocare. You may have to order it in depending on the store. I got some in Enniskillen today (Natures Choice) but had it on order.

https://www.biocare.co.uk/n-a-g-n-acetyl-glucosamine-60-caps Prescription isn't needed. It may be a Brexit related reason that it's not available here - animal origin (crustacean shell).

It happened just like what ByHook said. Got a text out of the blue from HSE to call me to the large test centre nearby. Had got previous two doses at GP clinic.

@ byhookorbycrook sorry to hear that

Stay strong

Another recent paper on N-acetyl glucosamine which shows a particular association with progressive MS.

"Previous preclinical, human genetic, and ex vivo human mechanistic studies revealed that N-glycan branching and/or GlcNAc may reduce proinflammatory responses, promote myelin repair, and decrease neurodegeneration. Combined, the data suggest that GlcNAc deficiency may be associated with progressive disease and neurodegeneration in patients with MS."

https://jamanetwork.com/journals/jamaneurology/fullarticle/2779917%C2%A0