Last reply 5 months ago
Just some advice on stuff :/

My name is Linzie-im the one with dark hair in my profile pic πŸ™‚
I was diagnosed with RRMS when I was 23 (I’m 33 now)
Ive been pretty much the same with relapses here and there throughout. I had 3 relapses in the first 10months of my diagnosis and was offered DMT’s but I refused as I wanted to go without for as long as I could with v.few meds…..that was untill now!

Ive had spasms, MS hug, vertigo to name a few but I have recently (July 19) had the worst relapse ive ever had and it seems to be never ending! I had to call in sick for work (psychiatric nurse) but ive since been told I can’t go back to my job doing the same role as its a high risk ward πŸ™ I love my job but I’m just not physically able to do it anymore😒
I went off sick and 3days later I couldnt walk, drive, shower myself, cook my food, carry anything (and I live alone) two weeks later I woke up one morning and couldnt see 😭 It has been horrific! My cognitive function is also shocking to say the least! My sick pay has gone to half pay, I’m claiming pip and I went to universal credit last week so I’ll be receiving a bit off them at the end of the month but they make me feel so guilty about not working etc (even though I’m still employed) Im off work sick as I’m not fit enough 2go back to work at the moment.eugh its just so frustrating.
Anyway I’m currently taking plegridy ive had 2injections but I’m currently v.bruised from the latest one. Anyone any advice on this peginterferon injection or beta interferon it might be called🀣
Apologies for this essay just helps to get it all out sometimes!
Much love
Linzie xxx

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beckybarnes
5 months ago

Hi Linzie. I was diagnosed with MS last year after a severe optic neuritis attack which has left me permanently blind in one eye. I also have damage to the communication path between my brain and my right leg and its becoming increasingly difficult to walk even with aids. The severity of my optic neuritis attack has led my ms team to suggest I’ve had MS for a considerable time and because it was undiagnosed it was also untreated. I’m 47 and quite disabled.
The foundation of ms dmt’s from what I understand it is to protect you from a future disability that you would have accrued if you had not begun treatment early on….such as myself. I can understand you wanting to put off treatment and possible side effects until later on but just consider that waiting may reduce a lot of your options.
I started Lemtrada this year and I’m due my second treatment in Feb 2020 . I’ve never been much of an advocate of medical drugs but when your consultant explains your remaining sight may depend on it it alters your previous opinions somewhat.


linzie_emma_lucy
5 months ago

Hiya @beckybarnes I really wish they had explained the medication side of things alot more clearly (like they did in July) as I may have been more likely to start treatment early.


elisabeth_turner
5 months ago

@linzie_emma_lucy sorry to hear you are having a rough time. Have you had steroids for this last relapse? And did they help at all? I have always found that they have really helped my symptoms. I would say do NOT feel guilty about the UC / PIP or getting any help you can. I do empathise with you though, MS can leave you feeling like a fraud. But you’re not, you need the financial aid to help you get better. You don’t want to not be working, but right now it’s not an option, so please don’t give it a second thought. Get your doctor to give you a nice long fit note saying you can’t work. Feeling guilty will ultimately make you feel stressed, which never ever helps MS. Really concentrate on looking after yourself and remember that relapses do eventually go away. And just because you declined DMTs initally, they will still help now that you have started them. Hope you start to feel a little better x


itsmewithms
5 months ago

As mentioned above there aren’t medications to “cure” MS or remove existing damage (there is some promising research but nothing on the market yet) the available DMTs only hope to slow the impact. Some are stronger than others. I will attach a link that lists out the options, at least in the US, to discuss with your Neuro. https://www.healthline.com/health/multiple-sclerosis/how-to-evaluate-your-ms-treatment-plan?utm_source=facebook&utm_medium=opt&utm_campaign=tysabri-retargeting-ms-desktop&fbclid=IwAR1oCSj5oRuEzJc2B4mTiwvcw_Qnwgsn-3zRzy3mU_s1cjLsvZV59_DYjsQ#the-bottom-line

They have varying efficacy and seem to have different effects on different people and over time so many have to switch between the DMTs over time to find what works for them now. I was diagnosed in 2005 and immediately put on Copaxone as there were only two options at the time and it was thought it would be the best for me but I had some attacks and some additional lesions over time so after 11 years and changing to a new Neuro I was moved to Rebif. I’ve had no major attacks on it but my conditition slowly deteriorates so I have more frequent foot drop and instability as well as splotchy vision in my left eye. Overall I can live with these issues but don’t want to give another inch! In hindsight my old Neuro should have stepped me up a notch several years earlier I now feel.

I was glad my new Neuro moved me to Ocrevus this fall. I’ve had the first two half doses and feel that I am actually experiencing a bit of a bounce back in symptoms now two months after the second half infusion and no negative side effects.

There are two approaches on DMTs. My neuros have been in the “old camp” of “escalation” theory where you take the lowest strength drug and see if that holds it and only move to something stronger if it fails. But you only switch after it has failed and you are left with the residual damage. The “new camp” is more aggressive and tries to prevent any attack and not allow any progression. You have to decide what you are comfortable with and a Neuro that agrees with your approach πŸ˜‰ I’ve now learned that I should “interview” Neuros to make sure they are in the same camp as I am. I’ve also learned a lot about the different DMTs and MS impact from the YouTube videos put out by Aaron Boster. If you search you will find him. Knowledge is power in this fight.

Good luck reconciling to what you need to do for you- MS is a very personal journey and impacts everyone differently, just know there is a lot of information and support in this forum- See you around πŸ˜‰


Anonymous
5 months ago

maybe thats the reason why I developed atrophy I stopped treatments for so long for same reason.


linzie_emma_lucy
5 months ago

@elisabeth_turner thankyou very much for your lovely reply. I had steroids (finally in aug/sept time due to my main neurologist bein away at the time) the junior neurologist felt as though I was coming out of the relapse how wrong was he haha. Anyway Ive had steroids which was a killer I didnt sleep for 5days they sent me manic! I also had a urine infection at the same time so was on antibiotics for that too. Ive since had another urine infection and I’m going to my doctors tomorrow so they can check again! The steroids helped slightly with my mobility but it took ages for my vision to sort itself out (I had double vision) I couldnt watch tv or message friends or anythin was awful.

Thanks all for your support much appreciated xx


itsmewithms
5 months ago

This video is exactly about determining what “style” your Neuro is… https://www.youtube.com/watch?v=oKFgOiIVry8


char89
5 months ago

I started plegridy a month ago , I get flu symptoms and red site reaction. Get first lot of blood results tomz hopefully they are fine on this medication πŸ˜‰


wobblygirl04
5 months ago

So sorry you’ve been having a shitty time. Me too. Been having a really bad relapse since September. My good side is now my bad side and my bad side is now the good one! Was on Tecfidera for about a year then came off it and am now back on it – don’t know if the two are related but this latest bundle of joy arrived after I’d been back on it for six months. MS is such a slippery sucker. I find the only thing that helps me with my wild and wonderful symptoms is THC in whatever form it comes – mj, hash, edibles, oil etc. I wish this country would wake up and legalise it properly. As it is they’ve made it legal to prescribe only no-one is doing it on the NHS cos they’re afraid of lawsuits if anything goes wrong. I know 100% that it helps me – it won’t cure me but it can make this challenging MS life more bearable! Hope you sort out your meds. I reckon it’s better to be on them if you can tolerate them, than not. Tec has a 50/50 record of slowing progression – I wouldn’t put those odds on a horse but if that’s my only choice, I’ll take it. Good luck and thanks for your post.

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