@wobbleone

Last reply

wobbleone

Treatment eligibility

Hi just wondering of fellow MS’ers diagnosed with RRMS whether you are on treatment or not and the reasons either way and how long since diagnosis. I keep reading that once diagnosed you should start a DMT as soon as possible but know that for a lot of us the reality is not so straight forward. Thank you for reading...🙃

pippa87

@pippa87

Hi, I got diagnosed in Feb. My MS team (and I) have decided that we want to keep me as fit as I am now and to help prevent any build up of future disability and help stop any progression. I have a very healthy diet, exercise daily and have a very positive mind set, but have done for years and I still have had relapses so I can’t solely rely on this to help me. (First sign of inflammation 5 years ago and then in denial until recent diagnoses) As I am so healthy and young-ish (31) we have chosen Ocrevus as I want to try and do the best I can to put a halt to it. After all, if it doesn’t agree with me at least I can say I’ve tried! Good luck with everything!

pippa87

@pippa87

I am very lucky to have been offered Ocrevus, I have had a few relapses recently and active lesions on the MRI I was able to have this as an option. I know for some people it’s more difficult to be able to choose the treatment they would like as they don’t meet certain criteria etc.

MamaWals

@MamaWals

It took me six months to start treatment because I had to get it preapproved by my insurance company (US) and needed another MRI and lots of blood work they kept losing. I’m on Tysabri because my MS was “highly active.” Now there’s no activity that can be detected (no relapses, improvement shown on the MRI). I just switched to an extended dosing schedule to reduce the PML risk and minimize the impact on my immune system.

Sam_Trimble

@Sam_Trimble

I was diagnosed in 2010, first year was spent on copaxarone and had one flair up in 2011. That mixed with the medication not working the way it was supposed to with my body I was switched to taking Gilenya.

Mlgilber1

@Mlgilber1

I was diagnosed 2018 and went on Tec a couple weeks later and then relapsed a couple weeks after that so I’m now on Ocrevus since my MS is aggressive. Now I’m finally stable.

supermum1983

@supermum1983

I was diagnosed in jan this year on no treatment, but i suffer from fatigue inflammation and aches and pains. They haven't put me on any dmt yet i dont want to unless things change drastically

TracyD

@TracyD

Diagnosed November 2014 - Lemtrada as the first and only treatment in May 2015- as I was Highly Aggressive RRMS 6 massive relapses with multiple new lesions in less than 6 months. I've been NEDA (No Evidence Disease Activity) for the last 4 years Hit it hard, hit it fast and hit it like a ton o bricks :) xx

wobbleone

@wobbleone

Thank you all for your replies, I’ll get back to you soon.. got some urgent work to bring up to date if my brain will get working... it seems to be very good at procrastinating but not much else at the moment.🙄 I’ll be back soon .... ish x

Highlander

@Highlander

@wobbleone Can't work out if your male or female...I'm guessing your male as we are very good at procrastinating! Or your ms is really taking a toll on you, and you now know how us blokes perform on a daily basis😃 If you are female just take note of the DMTs and pregnancy should you wish to start a family. Happy trails😃

wobbleone

@wobbleone

@highlander.. I am female, the males in the house must have rubbed off on me. 🙄 Really it’s the toll of the ms added to a nightmare time of other things .. I’ve hit the wall... Haha that definition though has stirred me into getting on with things .... Nope ... still can’t..😅 Family planning not in the way of treatment, I’m past that ... it’s the NICE criteria combined with years of misdiagnosis....anyway I’ll get to that later.. Stop distracting me from my work 🙃

Highlander

@Highlander

@wobbleone 😁 get on with it then!!😅

TheQuietLady

@TheQuietLady

Hi @wobbleone I was diagnosed in Feb this year, just a week before my 48th birthday 🙂 Was advised to go on Ocrevus or Lemtrada, it felt like the neuro wanted to act on it, then of course Lemtrada was restricted so that only left the big O! Saw MS nurse 2 weeks ago but she warns me that there's a shortage of skilled nurses so it's a 6-10 week wait before first half dose. It is very difficult to decide whether or not to have treatment but I am prepared to try it, I will try and improve my diet, exercise etc but I feel like they can only do so much, IMHO. Anyway, good luck!

wobbleone

@wobbleone

Hi all and thank you for your responses. I was diagnosed last year at the grand old age of 50 + a few more😳 I have had classic symptoms for a long time but they have been put down to trapped nerves, vertigo, stress, anything but ms. I was even diagnosed with a stroke which has now been cancelled out. The stroke diagnosis was probably the most damaging as I blamed everything on that and didn’t return to the GP until stopped in my tracks by some severe balance and mobility issues and classic l’hermittes which led to my diagnosis. I was going to join the circus doing my triple somersaults but thought I better see a doctor instead...🙃 I am now diagnosed with RRMS and have had it for at least 10 yrs I am told ( when I suggested that a while back I was told I should see a psychiatrist 🤪) Anyway, I’m not eligible for dmts, not enough relapses... or should I say documented relapses due to other diagnoses over the years. I have had a few problems since diagnosis though so I suppose we’ll see what the next scan shows... mind you I’m already overdue by 6 months for the follow up I was promised...🙄 Sorry for the ramble, I got a little side tracked and lost in relating my journey. Thank you again for your stories though, they’re a great help.

Stumbler

@Stumbler

@wobbleone , don't wait for the NHS to catch up with you. If they have committed to a plan, then do let them know if they have missed a date or overlooked something.

wobbleone

@wobbleone

@stumbler I chased it last week (again)... We are called patients because that’s what we have to be ... “patient”.

wobbleone

@wobbleone

@nutshell88 Gosh you were very young when diagnosed. My problems I think started in my mid 20’s. Re my “stroke” I was put on the standard aspirin and statin and a low strength bp pill. I queried the statin as my cholesterol was low. The neurologist said I’m not bothered about your cholesterol it’s for the inflammation. 🤔 I find it interesting that they are researching simvastatin for ms now. I’ve also seen research about low dose aspirin... My new neurologist says my scans showed my ms back then. 🙄 Oh well, can’t change the past ...🙃

chriscoxrox

@chriscoxrox

@wobbleone I have been on several different MS therapies over the years and had to switch for many different reasons. I have been on ocrevous for the last year and a half and so far so good. We all react differently to meds. Just remember that most of all. As far as being on a med, my opinion is to be on one and also do any other treatments as a helper but not as a main med. Ocrevous is my main med and I also try to eat healthy and take vitamin D. Some chose not to take a MS approved therapy but I have seen both cases with people and I firmly believe that a therapy does help to slow down progression. You just have to work as a team with your neurologist. Doing nothing just lets it progress on its timeline. With a med you have a bit of control. Most drug companies have a free drug program or assistance depending on your income and insurance or lack of. Good luck navigating the waters!

DominicS

@DominicS

@wobbleone the NHS is fantastic in principle. To achieve the optimal outcome you need to learn to work within it and manage it in order to get the best outcome. You have taken the correct message. Hit it ASAP, hit it as hard as poss and self-manage your lifestyle factorsm I have had MS 26y and am on my fourth DMT, Ocrelizumab. I was petitioning for Oc a year in advance of it receiving a license. Reading about it, learning to differentiate reliable sources from the inevitable Woo you'll come across and like others have said, keep yourself fit and eat a proper diet. This is not a death sentence, it is a chronic illness that it is down to you to manage. Folks here will see you right!