I’m 25 years old female who was diagnosed with RRMS in 2019/2020(I can’t remember exactly) , following two relapses in 2016 and 2018.
Since then, my recovery has been excellent. Currently, the following symptoms exist:
fatigue
Internal “twitches” including my eye at the moment
Pin and needles (that are only brought on a a result of spending a long time on the toilet or sitting in certain positions)
Chest tightness (usually when stressed, tired or cold)
I’m a typical female in my mid-20s, I work in sales both at home and at the office. I regularly go for walks, work out twice a week, make an effort to eat healthily, and, while I try not to pay myself on the back, I was blessed with an athletic build (probably due to playing sports as a child) and believe I’m in decent shape.
MS fills me with a great deal of unease , as you can imagine and wanted to know if it’s possible to manage my MS privately with a private neurologist. For instance being seen once a year with an MRI to monitor what’s going on internally would put me at ease.
Apologies for rambling on, in summary I want to know if it’s possible to manage my MS privately.
Does anyone have experience of this.
Hope this is all making sense.
Update as of 04.07.2022 thank you to all for your replies it means a lot.
You’re best checking first whether your NHS neurologist sees patients privately and, if so, going with her/him. That should make life simpler if you want or need to take a disease-modifying treatment, which would usually be done through the NHS.
By the way, in your shoes, I would in any case go for any DMT that I qualified for - the name of the game is staying as well as you can be and most of us need all the help we can get.
Done what? I’ve done the initial private (Private health cover at work) and then NHS thing, as have many of us. But there was no question of staying private after dx: I wanted to start treatment asap and have been on DMTs ever since (20+ years) if that answers your question.
If in the U.K. look at NICE, MS Trust and MS Society websites. Your MS Nurse should lead you through this but the decisions are in the hands of a consultant Neurologist specialising in MS. It pays to understand the system but you need to be in the system.
Hi and welcome. You sound like you are in a reasonable place with your ms …. and bonus… with a body to be proud of ….must say I am a little jealous.
Not sure where you are in the system but further advice over taking DMTs may well be worth having. If you can slow down disease progression and kick it further into the future then at least the immediate future is something that is easier to deal with. Plus the will keep those abs for a little bit longer
The good thing about having aggressive RRMS is that you get DMDs automatically, and the bad thing about it is too obvious to mention.
If I had my time again, however. I would have been much faster and more assertive in insisting that it was time to switch from Avonex to Tysabri. So my advice to others is this: if you want DMTs or feel you need stronger drugs than the ones you’re on, be assertive and be your own strongest advocate. There’s no one this matters more to than you.
Aplogies, i should’ve reworded my question. I was asking if yes, you had went private to manage your MS.
Two quick questions, well 3.
(1) by “dx” I assume you mean? diagnosis
(2) In terms of staying private, what does your care look like and what costs are involved? I.e how often do you see a neurologist and get any MRIs done.
(3) Did you qualify for DMTs as soon as you were diagnosed.
Sorry for the questions and thanks for your answers
To be honest I’m extremely grateful for the position I am in, trying to look at everything from a positive mentality and doing everything in my power that i have control over.
To be honest after diagnosis in 2019/2020 apparently I didn’t not qualify for DMTs. Now that I understand more, I’m debating if I should start now… regarding the abs comment LOL thank you ahaha
(1) Yes.
(2) I have been purely NHS since 1999. My last private consultation was the bad news one (not that it was a surprise). I was lucky and got on Avonex right away and stayed on it for 10 years. Fast forward to today, I’ve been on Tysabri for 10+ years and visit the hospital monthly and can chat to the MS nurse if I need to. I haven’t seen the consultant neurologist for years because I haven’t needed to. Last face-to-face consultation, he said to me Tysabri can do that: one minute people like me are relapsing all over the place and in and out of his consulting rooms like a fiddler’s elbow and next thing they’re on Tysabri and it all goes calm. That describes me, I’m glad to say. I have an annual MRI as is standard for Tysabri patients: they want to know what your brain looks like at baseline in case there is cause to suspect PML.
It is worth saying that I got on a DMD straight away because I was having disabling relapses, leaving permanent damage, right from the start. You wouldn’t want that. But I do think that I would have wanted to get on a DMD as soon as possible even if my MS had not been as aggressive as it was.
I’ve never heard of anyone not qualifying for a dmd to be honest so I’m a bit confused. I have an mri once a year on the nhs so wouldn’t see the sense in paying for the same. Healthy body and mind definitely helps enormously, but as others have said definitely alongside medication, you want as many tools in your box as you can have!
Charlotte x
I think by “qualify” the consultants must have some sort of internal criteria for an individual to meet. I would also assume it depends where you’re located. Do you mind me asking where you’re based?
Besides that post- relapse (both of them) I think they probably didn’t see enough “damage” to start me on DMTs. But it is something I’m looking into because at the time I didn’t really understand much other than the shock of the initial news.
As you say you have been diagnosed with RRMS, you probably qualify for one of the many DMTs. However, it often takes some time for the consultant to make their mind up as to how severe your MS is and they may also be awaiting to see how well you bounce back to confirm it is Remitting. In the meantime educate yourself about NICE guidelines and from the MS Trust and MS Society websites. There is a fundamental difference in approach among consultants. Some advocate an aggressive strategy from the start where others prefer escalation. There are some trials in place to compare the strategies.
There is a back log of appointments that have not taken place including those of people who have relapsed despite DMTs.
Also coming back to this comment “ It pays to understand the system but you need to be in the system.” What would you personally suggest? I.e I’ve been having new symptoms and can’t see neurologist until Dec 2022?
