@melissag

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melissag

Mixed emotions at MRI results

Hi everyone. Haven't posted much lately but I felt inclined to share today. So, I hadn't had a brain MRI in 2.5 years, and they finally set me for one last month. I don't see the dr until February so I asked my chiropractor (who also does neuro rehab etc) to get the results for me. We went over them today and I found out that some of my existing lesions have gotten a little bit smaller, but I also have two brand new ones. So I'm glad to hear about the smaller ones, not so glad about the new ones. Also frustrated that I won't get to see my neurologist until February to go over these results. Last time I saw him I inquired about lemtrada which he said I'm not a candidate for, and that perhaps in the future if things progress I will be. Now I'm not sure if these two new ones will be enough for him to consider it or not, but I'm hoping so. Even though I'm also a bit scared of the process of having it! Just yet another MS rollercoaster over here, though got sharing with my fellow MSers might help me wrap my head around it all a bit better :)

Stumbler

@Stumbler

@melissa-g , MS is what it is, a progressive and degenerative condition. Your present treatment, Tecfidera, is supposed to reduce the frequency and severity of relapses, but it may not halt progression! Lemtrada works in a different way, it allows the immune system to regenerate, without the MS characteristics. Ideally, you would think that Lemtrada should be a first line treatment. Why try treatments that slowdown damage, when you can have a treatment that can stop the damage? You can understand the philosophy of the "hit it hard, hit it fast" camp. I saw my Neuro yesterday, following an MRI scan earlier in the year, my first one since 1997. I had already been told that it showed no activity. My Neuro said that MRIs just don't tell the whole story...... Do your research about Lemtrada so that you can make up your mind if you want it. Then, you have to be able to build up a case so that your Neuro can't deny you. @tracyd posted a very good case sometime ago. :wink:

TracyD

@TracyD

@melissa-g If the rules for prescribing Lemtrada are the same in Canada as the US and UK then those 2 new lesions should meet the qualification criteria, if you drop me a PM with an email address I'll send you the 'case building documents I have xxx

melissag

@melissag

@stumbler yes I have been trying to get them to prescribe the lemtrada for some time to no avail. I'm curious if this will be enough to make him consider it! But I have done a lot of research and talked to people who have had it here on shift and it just sounds like the best option! @tracyd thanks very much, I will send you my info

suziesue

@suziesue

@melissa-g jst joined reading yr posts I started my first DMT with Tecfidera my god I was ok then 4 mnths on severe moving joint pain passed out as it gave me virus I live alone awful side affects I stopped my MS nurse started me on Copaxone in June this year I have RRM im ok jst severe anxiety and added as one of the side affects think its a gamble with DMT'S find one that suits.

Bluejay2025

@Bluejay2025

I’m sorry it had been a struggle finding a treatment that suits your body. I used Copaxone for several years but really always struggled with the injections. Currently I am on Tecfidera because it’s a pill. My body tolerates it well and my MRI’s are consistent. I hope Copaxone is the one for you. Feel better!

melissag

@melissag

@suziesue I hope copaxone goes better for you too! It definitely can be a stressful thing to figure out. I've been on gilenya for about a year now and it seems to be going okay, just went for another MRI last night so we'll see what it says!

suziesue

@suziesue

Does your neuro arrange mri's on yr treatment? If so how far into treatment does he arrange? Ive asked for all my mri's before treatment

MarkatWindsorCastle

@MarkatWindsorCastle

I am just going onto Lemtrada after a 2 year stretch on Plegridy. I am waiting for MRI results, however, this has not halted a decision from the neurology dept, good or bad re results from MRI I have been advised to get onto Lemtrada as it is a better option. Hope you find the answers to help make your mind up. Mark

shadow69

@shadow69

Do you know if Lemtrada has a lot of side effects?

Stumbler

@Stumbler

@shadow69 , the short answer is "yes". Will you get some/all of them? Probably not! The pharmaceutical companies that produce drugs have a legal obligation to quote any possible side-effects. That's why headache tablets have a quoted possible side-effect of a headache! There's the Patient Information Leaflet for Lemtrada here:- https://www.medicines.org.uk/emc/files/pil.5409.pdf

Gijs

@Gijs

"I saw my Neuro yesterday, following an MRI scan earlier in the year, my first one since 1997. I had already been told that it showed no activity" Sorry for replying to and old thread, but, what you're saying is, no changes in your MRI for 20 years?

KLouise

@KLouise

Hi @melissa-g sorry to hear about your new lesions. I'd thought I'd reply, as your situation sounds very similar to mine. I had an MRI at the beginning of the year that showed two new active lesions (I'd previously been stable on tecfidera). It was really upsetting to hear it, so I empathise. After many months of wrangling with the options for changing, I've finally decided to go ahead with lemtrada. Like you, I came to the conclusion that it's really the best option to try to stop the damage MS causes. I don't know about prescribing rules in the US/Canada, but the two new lesions qualify me here in the UK. I hope you're able to build a case and your neuro supports your decision. Best of luck to you.

melissag

@melissag

Hi @Klouise I posted this one quite a while ago! So things have changed since then. I did have another new leison on my last MRI, but still no luck with getting lemtrada. I did post recently again that I was offered Mavenclad, I started seeing a nurse practitioner along with neuro at my MS clinic and she was the one who brought it up to both of us. I've decided to move forward with it and I'm hoping for the best!

KLouise

@KLouise

Oh I think because people have responded quite recently it was high up in my feed @melissa-g! I'm pleased to hear you've been offered Mavenclad. It looks like a really good drug. Hope it all goes well for you X

spunky

@spunky

Hi @melissa-g Sorry to hear about your additional lesion. I can’t believe they still won’t prescribe you Lemtrada as you have repeatedly requested. You look young in your picture, have you mentioned anything to them about potentially wanting to get pregnant even if this is not the case? That was their key word with me along with active ms...but I am 43 (with 2 kids already so not prime pregnancy age) and haven’t had any activity in 3 years The limitations and lack of drug choices in Canada scares me as the system is overly conservative. We don’t fully have a choice about our dmt over here even though it is not necessarily government funded. Good luck with Mavenclad and let us know how you adjust to it! Spunky

melissag

@melissag

@spunky you’re right that we don’t have as much say around treatments as some countries, it’s very frustrating! The nurse practitioner actually recommended mavenclad to me because of the possibility of wanting kids one day. Without her I don’t think I would have even been offered anything other than the Gilenya I’ve been on. So I’m hoping for the best with it!

apop

@apop

Yes Melissa I would like to have a friend in this site. My name is Ana I have the Relapsing Remmiting type. I am new to this site. I am not sure how to use it. Do I ask my questions to someone specific or I just start a conversation with someone. There are times when the simplest things are confusing due to terrible MS fog.

Geee_H

@Geee_H

I’m finding the whole diagnosis thing so frustrating...it’s been nearly 3 years now, started with TN caused by brain lesions, then what I can only assume was a relapse and now uveitis has made me blind in one eye (I’ve only recently found the connection to ms). I feel like I’m falling apart as time goes by, I was dismissed from my job on Ill health a week ago and I can’t help feeling that if things had progressed a little and clinical history played a bigger part in the McDonald criteria something might have been saved. I hope things move forward for you and indeed anyone going through this. All the best.

Vixen

@Vixen

Hello @apop, you can introduce yourself with a new post - refresh the home page, and you will see a green box with something like 'post on Shift MS' on it. If you respond to a post you are just adding to all the comments. If you want to address or respond to someone in particular, but @ in front of their name, and they will also be alerted via email. Good luck!