Last reply 6 months ago
MRI's

Hi 🙂 !

How many times do you get an MRI done?

I was supposed to get mine in June (year follow up) but my old neurologist (searching for a new one) said there wasn’t a point in getting it because I decided that I did not want to go on a treatment..

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itsmewithms
7 months ago

I would think not being on a DMT (although your profile says Copaxone) would be more or a reason to have a regular MRIs to determine if you had better get on one ASAP. If you are gaining lesions it (especially if not noticed/silent) you may need to start a DMT. Not sure their rationale.


highlander
7 months ago

@rel12
Hi
I agree with @itsmewithms.
There’s inot much point to having another MRI if you’re not on a DMT.
It’s like..why bother checking over your car for faults, if you’re not going to put any oil in it. It’s definitely going to break down eventually.
Put some in and it might last longer.
But it’s your choice as they say.
All the best.


mcgilligan
7 months ago

I get one every year or so.

I live in the United States.

I am currently on Rituxan.


lisa_morghan
7 months ago

Hi sweetheart my name is Lisa i was diq. At age 52 i started on Copaxone daily
injection really was easy but my first neurologist she’s retired so RX.was denial then went to #2 dr.he lost my MRI flim the 3rd dr. Kept moving his office 4
Different times so why im telling you this i do my homework google MS see what happens to your body if not !!! My sister leslie has had MS since age 23 “Sucks” big time now keep in mind they knew NOTHING about MS back then they had no medication for it so she never did her research and it hurts me to say “Leslie” is bedridden can NOT even get herself out of bed bye herself she now has 2 nurses am pm seriously find the doctor that works for you !!! Keep in mind at least now 2019 they do have medication that can possibly stop any more lesions from fucking you over !!! Please google is our friend they have information on dos and donts !!!


mlgilber1
7 months ago

I get one a year at least. Whether or not you’re on a DMT you want to see if there’s any new activity or progression. If there is then you can always decide if you would like to go on a DMT. You can’t always go off of how you’re doing/feeling because I’ve spoken to many people with MS that feel great, but their MRI shows new lesions or they feel horrible and have worsening of symptoms yet their MRI is stable. I would definitely find a new neurologist. Going on a treatment medication or not is your choice, but the doctor should always want to check for progression in my opinion.


lukezni
7 months ago

I’ve had 3 this year, but now that I’m on treatment I’m due 1 check up mri yearly


wobbleone
7 months ago

@rel12
My neuro is a bit similar as in scans aren’t really needed after diagnosis unless monitoring treatment efficacy.
He says he’s interested in “clinical events not spots on a scan”
I requested a scan anyway 12 months after my last and he agreed , not sure I’ll be able to persuade him next time though. 🙄

I’m not on treatment but not by my choice.


itsmewithms
7 months ago

I got to the point on Copaxone that I wondered if just regular monitoring with MRIs and quick treatment with Steroids was a better treatment path than the daily shots. It would definitely be cheaper and from the results may have been as effective. Copaxone is one of the early drugs that were available, was safe, had few side effects and at least you felt like you were doing something. But now that there are so many other alternatives out there it has been questioned if it should ever still be prescribed.

I’ve been watching videos on the Aaron Boster You Tube site and one dealt with this issue directly. He has episodes on many topics and a review of many of the DMTs available in the US, at least. This is the Copaxone one I watched since I was on it for 11 years and continued to collect lesions (many silent) while on it. When I moved to another Neuro he moved me off it quite quickly to Rebif. https://www.youtube.com/watch?v=Sd69KmEpsWM


itsmewithms
7 months ago

I should note that while I had no new lesions while on Rebif that may not be noted so much as an improvement but rather that I was moving into SPMS which acts a bit differently. Due to progression my Neuro moved me to Ocrevus.


lea_jeffreys
7 months ago

I had one in March and another one tomorrow evening. I have RRMS and had 3 relapses this year. I am due to start new medication in December. I live in the UK.


rel12
7 months ago

Yes, I am in the works with finding a new treatment with my new neuro. I def want to get back to getting on a treatment. Copaxone did not do it for me and developed angiodema, my body was just rejecting it. I just think it’s important to get MRI’s done to keep up with everything & to see what activity is happening in the process of all the changes. I would always hear that it was not good to get many MRI’s. Thank you all for the advice/comments!
@itsmewithms @highlander @mcgilligan @mlgilber1 @lukezni @wobbleone @lea_jeffreys


itsmewithms
7 months ago

Interesting that your body rejected Copaxone. It is one of the ones with very few side effects or issues so is often the “go to” for starting some one or if people are having a hard time finding a DMT that their agrees with. It isn’t terribly effective/strong from research I see but it was one of two that were available when I was diagnosed back in 2005 and then I likely stuck with it more from inertia than effectiveness.

Here is something to review and/or discuss with your Dr: “Our results indicate that there are significant differences in the effectiveness of the different DMTs in patients with MS. These data should assist in treatment decisions regarding the choice of DMT and enable clinicians to consider both real-world effectiveness and route of administration in consultations with their patients.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5447557/

I’ve also found Dr Boster’s you tube videos informative and he has ones on almost all of the DMTs available in the US. The more you know the better from my perspective 😉 and there is a lot out there! This is from a MS Dr in Ohio so better than the general internet fodder on MS https://multiplesclerosisnewstoday.com/2019/08/23/disease-modifying-therapies-dmts-new-school-fast-treatment-list-review/


rel12
7 months ago

@itsmewithms I know right! I was surprised too and bummed. I started with Glatopa and my reaction happened as I was working in NYC at the office – it was a nightmare! Copaxone has the same ingredient but months in, my body just gave up. Thank you for all the information, it is much appreciated 🙂 I hope you are liking the Ocrevus!


itsmewithms
7 months ago

@rel12 at this point my Ocrevus treatment is going well. I had the first two 1/2s and seem stable. I don’t see any big gains but no flush back of old symptoms as some have experienced.

Overall I seem a bit more balanced and find that I leave my cane behind when walking short distances on a level surface so I suppose I should see that as a positive 😉


peterfrancis
7 months ago

@rel12

I aasked my Nurse the same question, she said they only do Scans when a new lesion is present… How the hell would they know this without a scan in the first place?. She must have meant symptom, I goess.


rel12
7 months ago

@itsmewithms That is great. Yes, you have to look at the positive side of things!


kml1234
6 months ago

Being a patient and a health care worker I would say find a new physician only for the reason that he flat out told you that you can’t get one because you denied treatment. That has nothing to do with yearly MRI’s. If your symptoms have not changed then a new MRI may not be warranted but to tell you it’s because you denied treatment is totally unprofessional and inaccurate


Anonymous
6 months ago

year or couple of yrs.
i used to refuse treatments too.


kml1234
6 months ago

I was diagnosed around 02 and was lucky enough to be one of the first patients to receive Campath (Lemtrada) as a study patient. I got randomized to the high dose. I have not had any relapses since 🤞🏽 Just occasional issues with old symptoms if I’m over stressed or sick. I didn’t have any of the worse side effects that can be associated with the treatment. I’ve had yearly MRI’s since with no new activity.


watsoncraig
6 months ago

Post diagnosis (PPMS) I went 3 years without one as old Neuro did not see any point. But new Neuro had me MRI’d right away and there is new plaques, no surprise there, but when did they occur?


rel12
6 months ago

Update! Found my new neuro but still waiting for my MRI’s to be approved! It has been about a month & learning to be patient. After reading a few posts, I am seeing that this is a common thing for the wait. (eye roll) Hoping to get the call soon & start my new treatment. 🙂

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