Last reply 3 months ago

My symptoms are worsening. I am tripping and much more numb (entire left side) than before. I was diagnosed last year and have been working for months towards getting my body ready for an aggressive treatment (ocrevus). With this outbreak the world has been put on hold. I have not heard from the nurses or neurologist at the MS clinic as I’m sure they are extremely busy keeping patients safe. I have not started the treatment so I am not compromised in that way however my MS is aggressive in itself as I have new lesions (2 distinct ones in less than 6months). I’m panicking. I’m stressed. I was finally going to take control. My treatment is out on hold but my MS won’t stop. I’m not sure what to do or where to turn.

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3 months ago

Hello there @islandcat. Sorry about the timing of all this for you! Believe me, this stress and anxiety won’t be doing your MS any good, but of course you’re gonna be stressed. It’s a vicious cycle. I’ve just looked at your profile and see you’re in Canada. Well, on the bright side, Ocrevus was new to your country a year or two ago and before that, there was nothing for folks with PPMS. So, it is coming your way, and even in the last couple of weeks, the impact of Corona on DMDs has been slowly becoming more clear, mainly to the positive. My sister had it three weeks ago, then the next day they announced that they would postpone in the U.K. for now, so she was lucky. Focus on maintaining an optimum level of health in preparation. Healthy diet, exercise where possible, rest. Try to channel your energy and emotion into something positive. Music with headphones, writing, keeping a journal. Find one positive for every day and write it down to begin a collection. You can also write one negative if it helps; often the one feeds the other in this strange life of ours! Stay strong, this is horrible but life will improve soon. Be well x

3 months ago

Hello there

I was daignosed 2004 the first three years I noticed fatigue although I was just 17 and fit
lates one to reach upstairs
my grades were worse than normal
I wasnt able to study much something in my brain was stopping me but I was smart enough to achieve 97%

I havent had any treatments the first 3 years
not a single relapse but then I started rebef it was the only thing available
relapses stormed right at me stopped treatments 9 years to “”feel good””and live like s normal citizen lol
2018 took gilenya have atrophy lesions were allover before gilenya now 0 inflammation im still RRMS

what matters is you control your own resistant not your body
dont even think of ms try to do physio whenever you feel weaker even if at home
MS is in the panicking ,worrying activate it trust me 😉

be safe

3 months ago

Hello @islandcat,

The timing must seem horrible but may be good for you in the long run. I decided last year to not try Ocrevus because 1 – I spent most of the winter fighting off a run of UTIs and needed all the immune system strength I could muster. and 2 – Immunosuppressants and imunomodulators are not likely (IMHO) to be effective therapies. Eventually, myelin replacement will be the way we treat PPMS. The immune system glitch that gives us MS is incredibly complex and when it is eventually figured out it will deserve a few Noble prizes for the team that finds a way to shut it down, but this is 5 or 10 years in the future (and has been for the last couple of decades). On the other hand, there are a few promising myelin repair therapies in development.
I know, it’s hard to be patient when experiencing a cascade of symptoms like you are now. Life with PPMS is a constant attempt to maintain a balance that keeps your symptoms under control. Try to find that balance in diet or exercise or… something. Stress and panic can be enough to get my MS more active – it sounds trite but I find yoga and breathing exercises help to settle things down. Stay strong, good luck.

3 months ago

@islandcat – I have had 3 DMTs prior to ocrelizumab and I have had MS for 26y. Calling nit aggressive is not entirely accurate. More efficacious, yes. Definitely. Newer, tick. Untested and unknown it ain’t. It is a close cousin of rituximab.

Regarding infections – I have had the fewest infections ever since being on it. I am not sure if it is the extremely thorough vaccination regime that one has to undertake before starting. My wife is a Primary School teacher (of 7 year olds) and in the past it has been a reliable source of all the lurgy. I was rather dreading the last two seasons of general winter illness and yet I have had none. it is a real pleasure. I started ocrelizumab in early Jan 19 and so far have had three full doses.

It is extremely well-tolerated during infusion – for me, nothing. Just relating my MS Nurses’s experience – and is becoming very popular amongst the Specialist MSologist community. There is a reason for that and it isn’t the sinister conspiracy theories advanced by the occasional fringe-anti. It is because it is well-tolerated, works well and is not a burden on patient’s lives.

It is easy – and somewhat facile – to just suggest you stop panicking. It is an easily treatable thing, something your Doctor (GP- Neuro – Nurse etc) can refer you for. Generally easily fixed by CBT. As has been observed here, all the panicking and worry does is worsen your MS.

go to for a totally patient related site run by medics where you can address your qu to a doctor.

If MS is active and concerns both the Dr and the patient a risk/reward judgement will be taken (at many UK centres at least) and patients are still being initiated on ocrelizumab.

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