So I got the RIS diagnosis after a MRI and for migraines. After about a million other tests to rule out everything else my neurologist confirmed that the lesions do in fact look like MS. Ive heard of people having CiS just wondering if anyone else has had this diagnosis. There is not a lot of information out there yet on this one.
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i was diagnosed with RIS over 4 years ago after I had MRI due to dizziness. I had repeat MRI's for the next 3 years (which did not change) , up until this year. However, this past MRI, did show more
lesions , some enhancing , so I was given a RRMS dx. I do have a history of migraines too. I don't know if this helps you, but my story .
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Originally posted by me8k View Posti was diagnosed with RIS over 4 years ago after I had MRI due to dizziness. I had repeat MRI's for the next 3 years (which did not change) , up until this year. However, this past MRI, did show more
lesions , some enhancing , so I was given a RRMS dx. I do have a history of migraines too. I don't know if this helps you, but my story .
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There's enough information about RIS for you to be taking a second look at your diagnosis.
You said this yourself:
Originally posted by Cdod81 View PostHe said the lesions led him to believe I had MS but I didn't have many symptoms. Some RLS and tingling in my legs and dizziness but that was about it.- Brain lesions must be present that are characteristic of those found in MS.
- NO symptoms are present that can be attributed to the MS-type lesions. Put simply, that means that there are NO neurological symptoms present.
Criterion #2 doesn't mean "not many symptoms." It means NO symptoms. Zip. Zilch. Nada.
You said you've had some RLS, tingling in your legs and dizziness. Those are neurological symptoms, not NO neurological symptoms.
Neurological symptoms in the presence of brain lesions that are typical of those found in MS does not meet the definition of RIS.
It's well known that symptoms and lesion location don't always match up exactly. So arguments that the symptoms don't count because the lesion is, say, 2 inches farther to the left than the doctor thinks it should be to be responsible for the symptom don't hold water. 2 inches to the left or right doesn't turn CIS into RIS because someone has "not very many symptoms."
In addition, MS doesn't cause migraines, and the vast majority of people with migraines don't have MS. But the presence of migraines is higher in the population of people who have MS than they are in the general population.
Neurological symptoms and RIS are contradictory. So either you're mistaken about every having had the some RLS symptoms, tingling in your legs and dizziness -- do you now disavow all of it? -- or the RIS diagnosis is mistaken.
You can wait another 6 months or a year before following up. Or you can be proactive and go get that second opinion at an MS clinic from an MS specialist. The diagnosis might be the same, or it might not be. But at least it will be coming from an MS expert, and not someone you haven't already said you don't trust.
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Originally posted by Cdod81 View PostIt does help. Everyone I mention this to seems to know nothing about it. So you went three years without any kind of symptoms or anything? Did your doctor ever put you on any kind of medication? Mine has me on some vitamins and supplements but that is it and says there really wont be anything to do for a year. I just want to see if I should be doing something to keep it away for as long as possible if not forever, it just seems like there is not enough information out there yet. Thanks so much for sharing!
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I don't know though if RLS and dizziness are enough though though ? They are vague symptoms . Many people get dizzy and don't have MS. Same with RLS it is really common. My dizziness was fleeting didn't last 24 hrs Neuro didn't count it and I have a history of migraines with aura too. Some people are in a gray area for awhile
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Originally posted by me8k View PostSome people are in a gray area for awhile
It may also be helpful here to consider how the concept of RIS in MS developed.
As MRIs came into common usage, all kinds of things started being found on MRIs that weren't being looked for and were completely unexpected. In MS, MRIs began finding rare cases of MS-type brain lesions -- completely by accident -- that weren't causing any symptoms suggestive of MS (radiologically isolated here means isolated from symptoms). For example, someone would be in a car wreck, or have head or neck trauma, or impacted sinuses or a tumor in an eye socket. The MRI was done to look at specifically that, and the MS-type brain lesions were found incidentally. They were not being looked for.
Accidental finding of asymptomatic MS-type brain lesions when looking for something else is different than someone having a neurological symptom like dizziness or a tingling leg (which could be associated with MS, even if the symptom is mild) and the MRI being run specifically, intentionally to look for a cause of that symptom.
The argument can be made that, if a symptom doesn't fit the definition of clinically isolated syndrome, then the presence of MS-type lesions allows the case to be classified as radiologically isolated syndrome, because it has to be called something.
But the opposite argument can be made also. If a symptom was the purpose of the MRI, findings that could be associated with that symptom cannot be considered incidental and the symptom cannot fit the definition of isolated. And disregarding three types of associated symptoms just to make a label fit can be problematic.
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Originally posted by jreagan70 View PostThere's enough information about RIS for you to be taking a second look at your diagnosis.
You said this yourself:
Two criteria are necessary to meet a diagnosis of RIS:- Brain lesions must be present that are characteristic of those found in MS.
- NO symptoms are present that can be attributed to the MS-type lesions. Put simply, that means that there are NO neurological symptoms present.
Criterion #2 doesn't mean "not many symptoms." It means NO symptoms. Zip. Zilch. Nada.
You said you've had some RLS, tingling in your legs and dizziness. Those are neurological symptoms, not NO neurological symptoms.
Neurological symptoms in the presence of brain lesions that are typical of those found in MS does not meet the definition of RIS.
It's well known that symptoms and lesion location don't always match up exactly. So arguments that the symptoms don't count because the lesion is, say, 2 inches farther to the left than the doctor thinks it should be to be responsible for the symptom don't hold water. 2 inches to the left or right doesn't turn CIS into RIS because someone has "not very many symptoms."
In addition, MS doesn't cause migraines, and the vast majority of people with migraines don't have MS. But the presence of migraines is higher in the population of people who have MS than they are in the general population.
Neurological symptoms and RIS are contradictory. So either you're mistaken about every having had the some RLS symptoms, tingling in your legs and dizziness -- do you now disavow all of it? -- or the RIS diagnosis is mistaken.
You can wait another 6 months or a year before following up. Or you can be proactive and go get that second opinion at an MS clinic from an MS specialist. The diagnosis might be the same, or it might not be. But at least it will be coming from an MS expert, and not someone you haven't already said you don't trust.
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Originally posted by Cdod81 View PostNo, I am not MISTAKEN about my symptoms.
My question about your symptoms was nothing more than a rhetorical device (there are no personal implications in it at all) to draw your attention back to -- and apply some critical thinking to -- your symptoms, because symptoms are a key issue in your diagnosis and why what you're telling us doesn't make sense.
Downplaying key issues can keep you "safe," but only for a short time.
Critical thinking could allow you to ask your neurologist some hard questions and be a more active participant in the diagnosis and management of whatever condition you do have. But since you're not feeling up to it right now, it's undoubtedly better that you don't try it until you are -- until fear stops distorting what you're looking at.
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