don't understand: I just had my MRI with... - My MSAA Community

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don't understand

17 Replies

I just had my MRI with and without contrast and it still comes back no change. I am so sick of that but yet my leg doesn't work very well I fall down all the time. I'm always in constant pain what's going on

17 Replies
Midgey_Midge06 profile image
Midgey_Midge06

This may or may not be relevant - but i recently had major issues with sciatic pain and numb foot and stuff. It took a chiropractor to sort it all it.

I am not a doc - nor do i play one on tv - 😉 but maybe it is not MS related?

Also my neuro once told me MRIs cant image gray matter of the brain. So u cud have lesions no one can see?

ssdw1958 profile image
ssdw1958

One I like your name my name isSandra

maybe you should have another MRI at a different machine I did here that they are all different. I also had to have a spinal tap listen to the doctor when he says afterward lay down flat on your back for three days do not bend over because you will have a migraine as big as the state of Texas. Know kidding I had one

SueAB profile image
SueAB

Sandra, I hear you! I was DX in 1987 at the age of 40 and have had several neurologists, including one at an MS clinic. Now at 71, the last two neurologists I have seen have told me they would not have DX me with MS, even though my balance is bad, I have trouble walking, I choke when I swallow, I lift my right leg up with my hand to put on a pair of pants and my fatigue is with me every day. I wonder if the guidelines for DX MS are different today then they were back then.

I've been diagnosed with Ms relapsing-remitting since 1995 I mean it's a good thing that nothing more is happening but I know something's happening

erash profile image
erash

I have had no changes in my MRI x diagnosis 12 yrs ago, yet my symptoms have continued to progress and the thought is I have spms or ppms. However I did improve with steroids 2x this yr when there was worsening of symptoms and I am doing really well on Ocrevus. I believe the mri miss some disease activity

goatgal profile image
goatgal

sandras1 You are not alone. Since diagnosis in 2010, MRIs show no new lesions, yet my MS symptoms continue. Though I rarely experience a true exacerbation, I slowly decline in almost every function.

SometimesCrazy profile image
SometimesCrazy in reply togoatgal

Hey you two. First I'm not a doctor. I have been feeling the same way. I do have stenosis, spurs and a bulging disc. I saw my neuro and asked him to pull my scans and go over them with me to look for stenosis and there they all were. Have a great week!

Juliew19673 profile image
Juliew19673

That has got to be SO frustrating Sandra!

Are you on any DMT? What treatment are the Neurologists suggesting for you now?

bxrmom profile image
bxrmom

I'm so sorry you don't have answers for how you feel. What DMT are you on? Some places have a better MRI that shows more detail, wish more hospitals had them. Maybe you could get an MRI at one of those places? Please keep us updated.

Jessie

Ali_B62 profile image
Ali_B62

Could it even be something not MS related that has an effect? What we call foot drop over here? Hoping you get an answer to help you! ☺

I was on Copaxone for almost 20 years. now I'm on gilenya. that's exactly me it's been a long time since I've had an exacerbation

Memc profile image
Memc

Did they scan your whole spin?

lbenmaor profile image
lbenmaor

Sorry you're in no much pain. Have you talked to your Doctor?

Best Regards,

Leslie

Bygonelines profile image
Bygonelines

When I asked my neuro about this (I have the same problem), she said you don't have to have new lesions to get worse. The damage has already been done by the lesions you have. Also, the area where your lesion is located can and usually does continue to slowly deteriorate, even if the lesion is not active. Many doctors also believe that there are lesions that are small enough that they can not be seen by current MRI technology. My doctor believes that these tiny lesions are doing as much or more damage to us than the lesions we can see. All of these together make for an extremely frustrating disease process for us. It just makes me want to scream, holler, rant, and rave against this horrid disease.

Amore55 profile image
Amore55 in reply toBygonelines

Bygonelines, can I come over and scream, holler, rant and rave with you? Give that beautiful dog of yours a kiss from me! Love, Kelly xx

Bygonelines profile image
Bygonelines in reply toAmore55

Kelly, you can come over anytime and we can just have a wonderful screaming, ranting, and raving party. I will even have chocolate available. Do you need a ride? Willow sends a kiss back to you.

I just got home from my primary doctor and she agreed with everything you just said

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