Conflicting opinions about MRI scans- has anyone had similar experiences with initial MRI scans/ results?

[acorncloud]

I am completely new here and this seems like a community where there is a huge amount of expertise and experience so I am reaching out in the hope that some of you could share your views.

I had a neck MRI 18 months ago due to burning pain in my neck. This showed some wear and tear but nothing too concerning but incidentally a bright spot/ query lesion was found on the spinal cord, only visible in some of the images. The Radiologist recommended brain MRI so I had this completed a couple of weeks later.

The brain MRI showed multiple small lesions, some of which were confluent but overall deemed "nonspecific" and said these were more than expected for my age (I am mid 40s). There was also one small lesion on the corpus callosum. Because of this, the Radiologist recommended referral to Neurology and a repeat MRI in one year.

My physician sent me to a Neurologist who has a special interest in MS. They completed a neurological exam, which was normal. I did have some symptoms that could be completely random or relevant- some episodes of fatigue, pins and needles etc but essentially nothing that majorly points to MS. They were not even going to look at the MRI images but I insisted as I wanted their opinion. They looked at a couple of the images and were totally dismissive about the lesions as they don't show a typical MS pattern of being periventricular. They said the spinal cord lesion was probably an artefact and not real and that the corpus callosum lesion was probably an anatomical difference in that area and not a lesion at all. He said the lesions overall were not more than expected for my age. I was in once sense greatly relieved but also left wondering about whether their opinions about the spinal cord and corpus callosum lesions was in fact correct.

I sought a second opinion from another Radiologist (of the brain MRI only) as I figured this was the only way to get clarity. This report again said the lesions were non-specific and could be caused by a range of factors. It said there were at least 10 lesions in the brain and that these definitely are more than expected for my age. Regarding the corpus callosum lesion it said this was probably not a lesion but a spot of cerebrospinal fluid. So this left me again somewhat more concerned about the number of lesions and with a third opinion on what the "spot" on the corpus callosum is.

My own physician has recently referred me for a repeat brain MRI as the original Radiologist report recommended this. I guess I will see if this is stable compared to the previous one and take it from there.

To anyone who has read this far, thank you! I guess my concern comes from reading the MS diagnosis guidelines and basically, if I do in fact have a spinal cord lesion, a corpus callosum lesion and 10 brain lesions that is a concerning picture but the opinions on this have varied and the Neurologist basically dismissed the first two.

I wondered if anyone has had similar experiences along the way?

[CatsandCars]

Hi, acorncloud. Welcome to the group. I'm sorry that I can't share any relevant experience with you, but I understand your concern. It is somewhat hopeful that you aren't having much in the way of symptoms, anyway. Neurologists have an awful saying, which is that time is often the best diagnostician. Because waiting for answers is so much fun!

I really hope that you don't have MS, but I will say that there are better treatments now than ever. For so long, there was really nothing. When I was diagnosed in 2001, I felt very fortunate that there were three injectable treatments. Today's medications really blow them away in terms of delaying or preventing disability progression.

I hope someone else can answer your question more directly. Continue to follow up, and take care of yourself. Aaron Boster is a legitimate MS doctor on YouTube whose videos focus on what you can do to keep yourself healthy whether you have MS or not. I wish you the best. ❤️

[acorncloud in reply to CatsandCars]

Thank you so much for taking the time to respond. I agree that it is hopeful that I don't have much going on in the way of symptoms! And I think things will become clearer with time one way or another. I guess I don't find uncertainty easy to tolerate! And the different opinions have kind of made me less sure as time has gone on. I agree about the amazing medications now- I think that is a reason for trying to get clarity sooner, as there are treatments that can change the course of the disease. I really do appreciate you responding to me and your very kind words.

[Greentime in reply to acorncloud]

Not knowing is worse than knowing, I believe. Good luck to you! 🤗

[NorasMom]

Well, I'm probably the worst one to respond. I began having MRI's in the early 2000's, when they were still considered new and not available in any of our hospitals. I had to drive 40 minutes away to reach a specialized business that only did MRI's. Anyway, all of my MRI's up until 2020 came back as being negative for anything. In 2020, I finally got my MS diagnosis and they told me that many of the lesions seen on that most recent MRI had been there for a very long time, at least before the last 2 I'd had done. I also failed 2 evoked potentials, with one of them the same week as that diagnostic MRI.

As a result of all this, and much I haven't written(!), I have serious doubts about the way they conclude MS or not MS. If you feel that there's something wrong with you, then just keep on trying. It may take a very long time to get an accurate diagnosis.

[acorncloud in reply to NorasMom]

Thank you so much for taking the time to read my post and respond, sharing your own experience. I am glad you got diagnostic clarity in the end. It does seem like a slow and complex process. I hope the next MRI might make things clearer. Thank you again.

[Jer29-11]

Hi! I’m glad you were able to find our group. So, I’d trust the neurologist who specializes in MS over everyone else, lol. It is very hard at times to diagnose MS. I have “classic” MS on MRI, but this was initially missed by a radiologist when I went to the ER with terrible symptoms. I feel like if you had a spinal cord lesion, you’d have symptoms. I never had symptoms of MS although I had old brain lesions. My neurologist guessed it was the spinal cord lesion that finally caused symptoms. He explained it as a 2 way highway and if there’s a “block” on the road, it messes up everything. Yay! 😆

With all that being said, I think you should do another MRI and maybe find another neurologist that specializes in MS to read it. I feel like it’s really important to find a specialist! And unfortunately MS is a disease where they will correlate MRI with clinical symptoms.

Personally, I wouldn’t trust a radiologist. I know they’re not all bad, but I’ve seen too many misses personally and professionally (I’m a nurse). Good luck and I really hope this is not MS!

[felafelbowl]

You might talk to your neurologist about a lumbar puncture which can often clarify wether you have MS or not. I spent a year getting MRI s before the procedure clarified things .

[Tkotrl]

my MRI was also inconclusive. They did a spinal tap and it confirmed my MS diagnosis

[mrsmike9]

I was going to ask if you've had a lumbar puncture. Make sure you are seeing a real MS specialist! General ones, from what I've heard, are more scary from their indecisive ideas. They scare more people than they help.Once you've found one, tell the entire story. This person will review all the tests, perhaps do some more, and then be able to speak to you with more certainty.

Best of luck!

[Mollyabigail]

Welcome, acorncloud! As several have mentioned, a lumbar puncture might be needed. As I understand it, M. S. is hard to diagnose, but they can look at the bands (?) within your spinal fluid & normally determine whether you do or do not have M. S.Also, as mrsmike9 said, I would find an M. S. specialist. The general neuro I saw for several years was just awful.

Help me out, all you medical folks we have here. Do y'all recommend a lumbar puncture?

Teresa

[agate]

Welcome, acorncloud!

You've stated your situation very clearly, and it sounds as if various experts have been telling you that this or that notation on an MRI report could be disregarded as not indicating MS.

I've had 5 MRIs now (the first one was in 1984) and at least one spinal Xray, and those reports are filled with findings that don't really mean much except that they have to be noted because--well, they're there, and some day maybe they will turn out to mean something, but most likely they won't.

The spine seems to undergo a lot of changes as time passes, and they all have to be noted as being there.

What probably matters far more at this point is how you are feeling, whether you have any symptoms. I haven't heard of burning pain in the neck as a symptom of MS but you never know with MS.

I hope you won't turn out to have MS. As of now, based on the information you've given, it looks as if the doctors haven't come up with any solution to the problem of the burning pain in your neck and have told you that the MRI results aren't providing a clue. I hope that you've managed to find a remedy for the pain--and that MS won't be part of the picture for you.