I am in the midst of being tested for MS. My primary physician has told me it mostly likely IS MS. I've had tests done to rule out so many of the mimics, and they all came back negative. I picked up my MRI report today, and it states that there are several T2 and FLAIR hyperintense foci are demonstrated in the bilateral frontal lobes. The largest cluster measures approximately 8.2 mm in the high right frontal precentral gyrus subcortical white matter. Demyelinating disease is strongly suspected. My question is, I guess, what does all of that MEAN? I have also had a bout of optic neuritis as well as uveitis last year. Is an 8.2 mm lesion big, average?? And why would the report just say there are 'several' lesions rather than giving a specific number? Any help translating this is greatly appreciated, thanks in advance!
The one lesion described with any specificity in my 4 MRI reports from the past 4 years is described as 5mm, and sometimes as small. The others -- not clearly numbered, but seemingly implied to be few -- are called punctate, which is a radiologist's fancy word for dot-like.
MS is a demyelating disease. Since docs like to use that term, I suppose there must be others.
My understanding is that location is more important than size. I've had a couple lesions measure 10 mm or larger, and I'm still ticking! My reports also have referenced "several" lesions.
MRI reports use a lot of words that appear intimidating. Please let a neurologist interpret the findings and give you more certainty.
If it is MS, remember it's not a death sentence. Many people, including me, sort of appreciated hearing the diagnosis because it provided certainty, and explanation for all the mysterious stuff we'd felt. Scary at first, yes, but by treating it early, and aggressively, you can live a "normal" life.
I have an appointment next month with the neurologist, and the wait is killing me! My doctor seems to think that the neuro will just send me home and follow-up in a year or so. The idea of feeling like this and everything being up in the air for another year just depresses me. I know MS isn't a death sentence, my way of thinking is just let's get going on some sort of treatment so I hate the idea of waiting! I have military insurance, and the doctor wouldn't send me to an MS specialist or clinic, just a general neurologist. Will that affect getting treatment sooner?
I sort of doubt your going to be dx with MS next month based on those MRI findings, because no lesions were mentioned being in any of the locations they want for dx. Diagnostically, you need to have at least 1 lesion in 2 or more of the 4 specific locations (periventricular, juxtacortical, infratentorial, spine). I am suprised the report says "Demyelinating disease is strongly suspected" if they didn't detect lesions there, hmmmm do you know if any of the lesions did light up with constrast?
I actually suspect because of their locations (subcortical, bilateral frontal lobes) you might find Migraine gets mentioned, subcortical is associated with Migraine. The "largest cluster measures approximately 8.2 mm " is not refering to a single lesion but lots of tiny little ones, often when the lesions are pin pr_ick small and are close together, they dont list a number but call them a 'cluster'.
Wait and see is a common strategy when there isn't enough diagnostic evidence to support MS as the most likely dx. Keep in mind that anything neuro seems to be in blocks of 3, 6,12 month incriments (pre-dx that length of time waiting can be difficult) so dont be suprised if your follow up appointment is upto a year away, it happens so its not just a you thing, its frustratingly how they do it.
I can't speak to that last question, but I can tell you that I jumped onto this carousel in July of 2008. After spending a good half hour on the phone with my neurologist's office this afternoon, it looks like I am stuck here, on the same ride I've been "enjoying" all these years. Sooner or later, something may lead to a diagnosis. Until it does,
Strange that a doctor thinks it most likely is MS but won’t send you to an MS specialist, although the doctor presumably hasn’t seen the MRI report yet or hasn’t had a chance to discuss it with you yet. In any case, a general neurologist could serve your needs, and I would hope the regular doctor is wrong about the general neurologist just sending you home.
In fact, he or she sends you home, demand a good explanation why, because if there’s still suspicion of MS it warrants further investigation so you can start prompt treatment. Maybe there won’t be that suspicion anymore; “supermum_ms” is convinced otherwise and seems to make sense although I don’t know her medical background. If you have something else you deserve to know what it is, and it may warrant prompt treatment as well.
Out of curiosity I just found my first MRI online, from January 2004 (I was diagnosed and started treatment a couple of months later), the first of five I’ve had. It reports a 15.0-mm area of permanent neuronal loss is the right peritrigonal white matter, a 10.0-mm rounded area of encephalomalacia in the left inferior cereballar peduncle, and “over 20 greater-than-3.0-mm-in-size ovoid areas of T2 and FLAIR hyperintensity in the supratentorial white matter, with at least 10 smaller, but similar lesions in the infratentorial brainstem and cerebellum.” It all sounded nasty when I first read it, I guess it still does!
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