Last reply 5 months ago
No change in MRI so why am I unhappy?

Am I crazy? I just got my annual MRI back, official read is no significant change. So why am I feeling worse? Fatigue and pain, worsening numbness, tingling, balance off. Or, am I just magnifying all my old symptoms in my head? How can I feel so bad and look seemingly so good? I need some grounding from others here!

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stumbler
6 months ago

@rivka , we all look good. MS is an invisible condition, until we do something which shows off our weaknesses.

We can suffer residual damage from past relapses. The symptoms of this damage may be with us 24/7, or you may just become aware of it in circumstances where you are over-tired, or stressed, etc.. It’s your body trying to tell you to slow down or lighten up.

It does take time to learn about your new body. So, be happy with the latest MRI results.


rivka
6 months ago

Thanks @stumbler, I needed to hear that. In my previous life, I never took the time to stop and sit down, I always pushed and achieved. Now, I don’t want to stand up.


hmcampos
6 months ago

@rivka, asked myself that question over and over again, still do. Is this me getting worse, it it a relapse I didn’t see coming, is it in my head and I am exaggerating? How the hell is my MRI stable if I feel what I feel?

It is MS, period. We battle and we learn to live with it. Every stable MRI is a victory you should celebrate with a big smile, it means that to the extent of what you can do, you are getting some wins against it!

Cheers to you, head up high and keep going!
H


rivka
6 months ago

Thank you @hmcampos. “Why the hell is my MRI stable if I feel what I feel?” Exactly. Try explaining to a wonderful husband that it’s not comforting to see a stable mri since I feel worse. But you are right, I must be doing something right, and just keep soldiering on with my head held high. I am actually (or was ) generally an upbeat gal but this invisible opponent gets me every time.


vixen
6 months ago

Hello @rivka, yep, agree with everything above. I mean, it really is good news that there are no new lesions, that’s for sure. But it’s almost like the MS is operating separately from the lesions, nothing seems to make sense. I got diagnosed nearly two years ago. I still am no closer to understanding it, but now I don’t waste my time trying, I just get on with each day. So, you have my sympathy, understanding and support x


rivka
6 months ago

Thank you @vixen. I appreciate your comforting words. Also hmcampos, @stumbler, what you all said helped. Ok, I can get on with getting through each day. Thanks, team!


lightning87
6 months ago

I hear you, my last MRI was stable but have had tingling in my legs/back/feet. Who knows what is going on but we should hold on to the good results from the MRIs. We need to know when to rest more – I am like you, I push myself too much.
X


jreberg74gmail
6 months ago

@rivka i have had a stable MRI for at least 7 yrs. I am thrilled with each one, even though my balance comes and goes.


sfrox
6 months ago

rivka
6 months ago

@jreberg74gmail. Let’s hope these MRIs stay stable, even if our balance isn’t!
@sfrox, great article, read it several times. And great quote.


sfrox
6 months ago

It was an interesting but complex read (for me). Also interesting is the article on “therapeutic lag,” which mentions “compensating factors” that are in force when inflammation happens but symptoms have not occurred, yet (in the case of PPMS). That is such an excellent resource, discovered by coming here. Thank YOU!


merfield
6 months ago

@rivka, I too had no new lesions but my balance is rubbish, even sitting down which I do mostly plus I’m seizing up gradually. It’s the ‘wonder’ of MS – wondering what going to happen next!!! Keep on keeping on…….xx we’re all with you 🙂


rivka
6 months ago

Thanks, @merfield, nice to have fellow travelers on this ‘wonderful’ adventure!


tomlev
6 months ago

Hi, as above stated by sfrox, it’s a document that gave me some comfort, take a look! Cheers https://multiple-sclerosis-research.blogspot.com/2018/12/prof-g-what-is-therapeutic-lag.html?spref=tw&m=1


buitenmus
6 months ago

A neurologist told me that not all MS damage is visible on a MRI. They don’t know the reason for it, but it happens.


rivka
6 months ago

@buitenmus, Frustrating. I hate having a disease with questions but not clear answers. Ok, I also hate having a disease, or specifically, this disease. Too late to trade in for a better model?


dominics
6 months ago

MRI used to be considered the Gold Standard for assessing changes. Not so much absolute weight is given to it these days. Your comment is an ideal example of why.

It is a useful tool, but not the ultimate arbiter of disease progression.

Best,

Dom


grandma
6 months ago

@ rivka As your in the Holy Land very Merry Christmas to you and I wish you all the best for the New Year. I’m 62 , had the beast for 25yrs, still here, still fighting, not planning on doing anything different next year but keeping my chin up and fighting the beast any and every way I can, legal and illegal if necessary, though our Government has just given to go ahead fir Cannabis to be used in a few diseases, ms being one of them so perhaps I won’t have to be illegal in 2019👹🙏🏻✌🏼😍


rivka
5 months ago

Yes, @grandma, I am so fortunate to live right in the heart of where it all started, Jerusalem, Israel. May 2019 be filled with health and happiness for us all.

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