MS in all its glory

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

Hi everyone, hope it's ok for me to post here. Last week my wife was told by a neurologist that she may have MS. This was entirely unexpected by both of us and we're both just floored and devastated. No confirmed diagnosis yet but the neurologist said that his suspicion is strong. I'm posting because I'm just terrified and don't know what to do, we're in this limbo now while tests etc are done and it's awful. I'm scared for my wife's health, I'm scared for our future, I've no idea what to expect in terms of prognosis because I'm too afraid to look it up. I'm a ball of worry and stress and trying to put on a brave face for her sake but she can see through it. I can't eat or sleep with anxiety. She is surprisingly calm, collected and positive (relatively) about it all, but I am not so resilient. She doesn't want anyone to know until we know what's going on so I have nobody to really talk to about it and I feel like I'm going to crack up.

FWIW issues started 10 years ago with an unexplained bout of pins and needles that lasted a few weeks. At the time it was checked but stress related peripheral neuropathy was suspected. Then nothing for 8 years except she started getting migraine, first it was rare but became more frequent over time, to the point it became almost a daily thing. Since the pins and needles then she has had 2 what he called 'key events', both of which were separate but occurred in the past 2 years where she had what he thinks was Lhermitte's sign for a bit and then she experienced complete numbness from the waist down for 2 weeks but she didn't lose mobility. There are no residual symptoms now and no other symptoms were ever manifest like bladder/sight/mobility/balance/coordination issues. The only reason she was referred to a neurologist by the GP was was because of the persistent migraine leading to brain MRI and then to the neurologist. Even the neurologist suspected migraine based on the brain MRI until he asked about her history which led to his suspicion.

I'm not sure what I expect to get from this post, or why I'm unloading here, but thank you for reading. I wish you all well in managing your own illness.

George Jelinek's book "Overcoming MS" is a positive read and scientifically sound. https://overcomingms.org/resources/overcoming-multiple-sclerosis-book

Thank you both, I will get that OMS book immediately. The first suggestion from the neurologist was to start taking magnesium, vitamin D, and vitamin B2. Her migraines have completely abated since, just hoping it isn't a coincidence, but she hasn't gone a week without a migraine in a long time. She's a big believer in natural/lifestyle approach to wellbeing in general, so the OMS program will be her first port of call I have no doubt.