brain MRI normal but not spine/cervical

[sherm]

First, I'd like to say that I've been lurking on these boards for 2 months and the community has been fantastic and inspirational. Thank you for helping me in some way during what's been a ridiculously stressful period of my life by just being friendly strangers to everyone who crosses these forums.

I've been in limbo for about 2 months now and a small bit ago I just got the results of my brain MRI posted. I'm going to be discussing all this with my neuro after I get a spinal tap next week, but it's hard not to be curious and start to speculate about my diagnosis. I have a spinal T2 enhanced lesion and multiple T1 lesions on my cervical MRI. The spinal one caused numbness and tingling in my legs. My brain MRI just came back unremarkable/clear. No lesions. The most I've been able to discern from this is that it is "highly unusual." Do you know people who have had this situation? All the mimics have been ruled out basically. My guess is that it is still CIS, but I have no idea what the idea of having zero brain issues means for a potential prognosis or to the chances that this could later turn into MS with a subsequent attack.

I also got this MRI at the end of the day after my first infusion of solumedrol, but I'm not sure if that would impact it or not. Obviously the solumedrol could reduce any active inflammation that could have been occurring, but I would still think they would have seen something somewhere and it was only about 8 hours into my infusion treatments.

Also, my evoked potentials appear to be normal as well.

Thanks again

[22cyclist]

Sherm: First of all, I am sorry you are in the situation.

You can have MS in the spinal cord without having any brain lesions. It is not terribly common, but it does happen. You may also be tested for something called NMO Neuromyelitis Optica which walks and quaks like a duck called MS but is extremely different in some ways. It also has mostly spinal lesions. Either way, it seems like you might be in for a spinal tap or at least a blood test for NMO.

The steroids will have no effect on your MRI. There is something called a STIR image and also a FLAIR image that brings out the white matter lesions in the brain and spinal cord regardless of whether you have had 1 or 10 days of IV steroids. Since it was only one day it wouldn't even effect the T2 aspect of lighting up with contrast as you noted in your report.

For now try to stay calm, wait for your neurology appointment or for them to call you, which shouldn't take long with that report, so you can know what exactly it is you have. By that I mean you don't want to read up on MS if it turns out to be NMO, they are totally different animals. So hang back and wait for the doctor to call. If by tomorrow noon you don't hear anything, give them a call. You will feel much better.

Take care and let us know how it goes, OK?

Lisa

[sherm]

Thanks. I can safely say that I've already read up and researched more about ms than is probably healthy for any person without a definitive diagnosis. I already had the spinal tap scheduled, which I now see as a good thing. I've been really thankful that my neurologist has appeared to be completely on top of things from the start and has been very thorough. Slow, but it is a process and I can understand that and reading some of the stories here helps put my own issues in perspective and keeps me calm. We will see what may come, thanks for the reply and he information on the MRI with regards to the solumedrol. I thought about the same thing, but the infusion nurse had at least a small doubt and it didn't occur to me before that. I'm honestly still pretty excited by any kind of clean scan so I think that will get me over the hump of the spinal tap.

[jduke411]

Hi Sherm, I'm in the same boat. I have one lesion at C1/2 that enhanced with >5 O-bands in CSF. My VEP was normal. My brain looks great except for one little spot in the corpus callosum that we're squinting to see.

A month ago, I did 3 days of IV steroids and my local neurologist thinks it's most likely MS, but I went to Hopkins last week and they said that I'll have to just wait and see.

So, I'm waiting and trying not to think about it, but it's easier said than done. My dx for the moment is partial transverse myelitis. Let me know how it goes with you. We sound very similar and I'm curious to see how things develop with your case. I'm praying for the best of course.

[SNOOPY]

Hi sherm and welcome to MSWorld.

At the time of my diagnosis I had a clear brain MRI. My Neurologist felt, based on my presentation/symptoms, MS was affecting the spinal cord. He was correct.

My brain MRIs look "unremarkable" for someone who has been diagnosed with MS for almost 30 years. My brain MRI shows 3 lesions and they are listed as non-specific.

However, there was a time my cervical spinal cord had numerous (too many to count) lesions and is "consistent with clinical diagnosis of MS."

Have patience and see what your Neurologist has to say.

[sherm]

@snoopy, thanks. It's helpful for me to keep perspective and see someone who has crossed this bridge before me and started with similar symptoms.

@jduke, it certainly sounds similar though I know I have multiple lesions at least. I will keep in touch after my follow-up. As an aside, your diagnosis is honestly the best I am hoping for. I know it is still a different form of waiting and it would be in the back of my mind, but I would feel like it might delay it a few years or maybe go away. I saw a study on pubmed that basically concluded that after following people who had no brain mri lesions and were diagnosed with transverse myelitis...20 percent went on to develop ms after 10 years. With brain lesions, I've seen something like 60 to 80 percent and over a shorter timespan. I don't know if that helps at all to you, but I guess I'd rather have some odds of this being a one off event than none at all. I'll be going to georgetown in february too, they supposedly have a very good program as well if you are still looking for more opinions past hopkins.

[sherm]

Jduke, I'm curious, did the differing diagnoses you get actually change what your doctors recommended you do going forward? Did your neuro think it was ms enough that he was considering starting you on drugs or did he still take a wait and see approach as well? Are you going to be getting an MRI at some regular interval now or are they just going to wait to see if you get another relapse and go from there?

[jduke411]

Thanks Sherm for the positive info I've been reading up on studies as well and from what I've gathered I have a good shot at this being a CIS and nothing more. I've changed my diet as well to give myself the best chance at a positive outcome. I'm not sure if you've looked into diet at all, but I do believe that it makes a huge difference and at the very least it can't hurt, right?

I am not on any drugs at the moment. Hopkins suggested that I get follow up MRI's at 3, 6 and 12 months. I am going for another opinion at Mt. Sinai in 2 weeks and hopefully they will give the same recommendation so I don't need to agonize over whether or not I should be on preventative meds. My gut is telling me no to the meds though.

Good luck with the lumbar puncture. If it helps any, I was nervous as hell about the procedure and it was a walk in the park. I hope you get some answers soon.

[lynng1776]

clear mri

Sherm, i don't want to upset you, but it is possible to have negative tests and still have ms. I was dxd in 1991 and to this day all my tests have been normal. But i have had 4 exacerbations and a worsening of symptoms over the years. CIS is entirely possible so lets pray for that. Good luck and welcome to the site.

[sherm]

Just wanted to put an update in case others see my story here and find similarities with their own in the future. I received a cis/ms diagnosis today and am trying to get on tecfidera. We will see if insurance allows it off the bat. I have lesions on my spine and neck. None on brain. My left optic nerve was slightly slow on my ep. I still actually didn't get back my LP results, but the rest of my tests were enough for my neuro to be confident in diagnosing me and getting me started on a dmd ASAP. Now to just hope for a slow progression and a near normal life.

[jduke411]

Hey Sherm, I saw your latest post and wanted to follow up with you. I have a question...in your posts you keep saying that you have lesions in your spine and neck and I'm not sure what that means. I'm assuming you mean that you have a T2 lesion in your cervical cord and T1 lesions on your cervical vertebral bodies. I'm a 10+ practicing MRI technologist, and if that's the case I wanted to let you know that the "lesions" on your vertebral bodies are incidental findings (most likely hemangiomas) that would have nothing to do with your neurological issues. Either way, I'm sorry to hear that they are saying it's MS. I'm praying for your health.

[sherm]

I will be getting a second opinion within a week or two from one of the top ms specialists in the area and then another in February so we will see what happens. The t2 lesion is on my thoracic scan and it is most likely the culprit for my leg tingling. The t1s are three lesions they said were on my cervical MRI. It would be interesting if they turn out being totally unrelated since that would leave me with one lesion on my spine and a slightly slow ep, which I kinda wonder if glaucoma can do similar damage to alter test results there because I have a family history and slightly elevated eye pressure. Either way, if I still have ms then I would still think of it as a small victory to start out with one lesion since some aggregated studies seem to point to better long term outcomes being generally related to number of lesions at onset. Perhaps I'm just a generally positive person. Thanks for the info. I'm still waiting on my obands results and we will see how sure this next neuro will be that my cis will turn into ms, obviously the previous one was all but guaranteeing it so this guy's diagnosis certainly can't be worse.