So, I feel pretty well educated on lesions after reading the Health Pages (a huge thank you!).
But what about the other white spots? The ones that aren’t typical for MS – atypical size, shape, location; the UBO’s; the lesions that are caused by the other things they include in the differential in the MRI report, like sequelae of migraine, inflammatory disease, small vessel disease, etc.
Do these other types of lesions cause similar symptoms as MS lesions? Or would they be asymptomatic? Is there anything else that can help differentiate them from MS lesions besides just time will tell?
We know from studies about how many people with CIS and lesions go on to develop MS, but what about people with these atypical lesions? Are there any studies out there on that?
(My background - I am not diagnosed, but I have an abnormal brain MRI…multiple lesions but apparently they are not typical for MS. I haven’t had any clear attacks and have relatively mild symptoms, mostly sensory. But they do get worse with heat. All other tests for MS are normal (VEP, LP, neuro exam), as are all other tests for mimics. My mother has MS.)
Hi, Kiddo. My take on the "other white spots" is that they also can be MS. MS can cause lesions wherever there is myelin in the brain, brainstem or spinal cord. Yes, there is a "classic" distribution of lesions in MS, but even in people with the perfect pattern, there will be lesions that are in more atypical spaces. Some neurologists will only consider MS when all the findings, history, and test results are classic. I think they come to believe that only these classic people have MS, because that is all they see. It's a self-fulfilling prophecy.
There are a ton of us here with "atypical lesions" and a diagnosis. Ours were neuros able to extend their thinking to see that lesions happen as they will and "classic" only describes the middle 50% of patients with MS. I have not seen any studies that look at the number of people with MS who have "atypical" lesions. From our population here on the forum, I would think that it is sizeable.
What I am saying is that, within the context of MS, those "other lesions" are no different.
For example, I had only one atypical lesion in my right frontal lobe when I first presented with right leg weakness. My idiot, evil neuro immediately told me I was too old for MS and the lesion was a UBO - no one could say what it was.
When I finally saw a neurologist with some real smarts, he knew from my exam and history that I had to have MS. He saw that the mimics had been ruled out. He was very concerned when I told him that my MRI was negative (he is not comfortable diagnosing MS with a negative MRI). When he saw the UBO on my report - he laughed and said, "Your MRI is not normal. You have a lesion!" On the images he pointed out that the UBO was somewhat periventricular, ovoid and had its long axis perpendicular to the ventricles.
Now your history of not having clear attacks - this could cause some problems as a history of attacks is essential to the diagnosis of RRMS. So, this could slow you down also.
A normal neuro exam is another confounding issue, though the negative VEP and LP are not. If you have sensory symptoms, the neuro should/might be able to find areas of decreased sensation where there is numbness and tingling.
And your risk for MS with a parent who has the disease is about 1 in 50, a big increase from the nationwide risk of about 1 in 800.
So it does come down to ruling out the other things mentioned in the radiology report. And clearly looking at how your symptoms appear. An "attack" can be very mild - just a little sensory stuff.
Yes, Yes, Yes, it helps, thank you! I am going to UCLA for a 2nd opinion appointment in a couple of weeks, and I will try to be sure they do a very thorough exam, and I will point out specifically the spots where I might have decreased sensation. And I am hoping for a 2nd opinion look at my films, because I think there are some conflicting things in my reports (I have had 3 brain MRIs and 1 c-spine). For example, two reports say that there are no periventricular lesions, but one says a periventricular lesion appears more prominent, but they all say there are no new lesions. Huh? How can there be no periventricular lesions, no new lesions, but a periventricular lesion is growing? (my reports are in my journal and there are photos of my scans in my photo album, if anyone wants to see)
But I digress into my own story too much. Back to my general question.
Yes, it's true that plenty of people with MS have atypical lesions and that some don't have any lesions at all. But I guess I am wondering about the people who DON'T have MS but DO have lesions. I guess I am looking for some ammo so I can say, these can't be lesions from migraine, inflammatory disease, etc. because of XYZ. For example, if lesions from migraine, UBO's, etc. are asymptomatic, then there needs to be another explanation for the symptoms. Or if someone can tell me that there are plenty of people out there with white spots and mild sensory symptoms who never develop MS, then maybe it would be easier for me to just mosey on my way.
Regarding the information on "attacks", I think that maybe, yes, I've had plenty of very mild attacks of just a little sensory stuff, as you put it. But it seems like a new one every week, or something. I might have tingling in a spot on my foot come and go for a few days, and then the following week have the same tingling in my hand. It's not all over, I have several specific spots that this occurs in at various points in time, and it's all on my left side. It's just never been dramatic or lasted for too long, or had that much down-time in between.
Actually, what I really think is happening with me is that because of my mom's MS, I am hyper-sensitive to the goings-on in my body, and my first GP really listened to me and got me in to a neuro way before your average person might have gone in. A lot of the symptoms I have could have easily been brushed off, attributed to other things, or ignored because they don't inhibit daily life. But I do have lesions, so I think that I may just be in the very early stages of the disease. I have heard a lot of people with MS say that, thinking back, they realize they were having MS symptoms long before anything major happened. My mom was diagnosed in her 40's, and I am 34.
Any other advice that I can bring with me to my UCLA appointment to get to the bottom of my lesions?
And I think you should include in this, that most neuros do NOT count them as MS lesions if the lesions are 2 mm or less...I have 3 lesions, have no idea why they are there, and apparently neither do the two neuros I have seen now, and I have heard for two times in a row now that some lesions can form for "maybe being dropped as a child, falling down as a child, etc etc..." The current neuro. I am seeing, although much more concerned than the last one, sat down and said, "Well, I am "UNDERWHELMED" with your brain MRIs, despite the 3 lesions." Where he went on to say I don't have migraines, I didn't have a stroke (vascular disorders), and I don't have hypertension (all of which were differential diagnoses), and the last differential diagnosis said "MS"....hmm...does it really take a rocket scientist to figure this out sometimes? I mean, I honestly do NOT know if I have MS, if you have it either Laurel, or anyone, but I mean, I still have not had my lesions explained to me and I am giving up for now on having them explained and I'm moving on with life and focusing less on MS...
I honestly think some neuros are so narrow minded and if the lesions don't "LOOK" like MS lesions, there's no way you have MS even if you present with symptoms like me...I'm still waiting on my cervical MRI results, but I'm sure it will come back clean...
I read your posting and have found that I am experiencing similar symptoms. In May I began experiencing tingling in my left big toe that lasted about 3 weeks. Then one morning I completely lost control of my left leg (foot slap, etc.) but it only lasted about 10 minutes. Since then I've had left leg weakness, tingling in my feet, sometimes in my hands, and have gradually progressed to left arm weakness. My whole left leg feels a little numb, like there's some sort of thin film covering it. I, too, get different spots of tingling, sometimes pretty strong, in my hands & feet that doesn't seem consistent. I also get occasional muscle twitching in both the arm & leg, mostly when I'm fatigued. Nothing is terribly debilitating, just annoying and worrisome. I had a brain MRI which revealed several small white matter lesions. I have had blood work, EMG & whole spine MRI which were all negative. The neurologist I have seen doesn't think it's MS, & is leaning more toward migraines, although my migraines (never been diagnosed) are very mild & infrequent. I am being referred to the neurology dept. at UW Madison, Wis. So I would be curious to learn how your 2nd opinion goes for you. After several weeks of searching on the internet, you're the 1st real similar case I have come across.
Hi, Amy, welcome! Glad you found us. This is a great site for learning all about MS. Check out the health pages link at the top right for some good information. It has definitely helped me to be more educated about the possibilities and all of the MS mimics, etc. And all of the members are very supportive and here to help answer your questions.
I am new myself, and as you have noticed, in limbo. There are a lot of other members here also without a diagnosis, and many seem to be with similar symptoms as us - which is comforting on one hand, but of course I don't wish having to deal with these health issues on anyone.
I, like you, have been told migraines, yet I have only had a handful in my life. And I have had migraines since my first MRI, and yet my subsequent MRIs have been for the most part stable. Hmmm.
I will definitely give an update on my 2nd opinion appointment. My goal is to leave there with a satisfactory explanation for my MRI results and more than a wait-and-see approach to my situation.
It's tomorrow, yay! Wish me luck,
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