Hello! I am two years into this process. I posted on the Limbo page last night; but, I thought I would ask a couple of questions here. I have had 4 MRIs over the last two years. The first one was read as normal (it was ordered by opthalmologist and I didn't follow up because symptoms were better). The second one (ordered 8 months later when symptoms all came back and we put them all together) showed periventricular white matter changes suggestive of demyelination. I think there were some other lesions but those were the ones that landed me at the MS doctor. He ordered many tests and an LP.
The LP was negative and my CRP was high so I saw the rheumatologist. All of those results were negative and she told me she thought it would eventually declare as MS. I was feeling better so I put everything on the back burner ( we were moving and we have 5 kids). About 8 months later, I began to have facial numbness (new symptom) . It was as if a facial mask had dried and tightened on my face and then it would feel like pins and needles and burning (almost like I had taken steroids). It was time for a follow up with neurologist so I went. He pretty much told my husband and I that he felt like this was declaring itself.
I had two separate MRIs that showed lesions (the first one that was read as normal had lesions after all). He wanted to order another one and then we would start treatment. Low and behold, the MRI was pretty much clear. All the lesions that were previously there (they had changed between 1st and 2nd MRI and then disappeared altogether) were gone. There were a few tiny changes but he decided that we needed to do a neuropsych eval to show insurance we had ruled out all differential.
At that point, I was frustrated... A week later, I started with horrid visual blurring. I called ophthalmologist and he sent me to neurologist-opthalmologist. They found homonymous hemianopsia. (I felt like it was blurring not loss of visual field but apparently I was wrong). He wanted me to see neurologist ASAP. The neurologist wouldn't see me until my follow up 3 months later. So, I saw a new neurologist . He did neuro eval and found "lateralized findings of concern" so he ordered MRI, VEP , and LP.
The MRI showed "punctate white matter lesions of increased flair and T2 signal in subcortical white matter bilateral frontal lobes. Differential diagnosis would include post traumatic etiology, demyelinating disease though certainly not specific".. There were multiple atypically presenting hemangiomas in cervical and thoracic spine (this was previously 100% clear). There was also a low T2 star signal within the cortex of temporal lobe that measures 5mm.
They aren't sure what it is and I am going for CT today for that... The VEP came back borderline. It said it could be suggestive of demyelination if supported by MRI... I am wondering if I would meet criteria... It seems I have 3 different MRI's over 2 years that show white matter changes. The 2nd one showed periventricular. The others seemed more general subcortical. Would the borderline VEP translate to positive in this context ? based on the fact that is said borderline demyelination unless supported by MRI which shows possible demyelination?? Am I just crazy????? My LP is in 2 weeks.
The LP was negative and my CRP was high so I saw the rheumatologist. All of those results were negative and she told me she thought it would eventually declare as MS. I was feeling better so I put everything on the back burner ( we were moving and we have 5 kids). About 8 months later, I began to have facial numbness (new symptom) . It was as if a facial mask had dried and tightened on my face and then it would feel like pins and needles and burning (almost like I had taken steroids). It was time for a follow up with neurologist so I went. He pretty much told my husband and I that he felt like this was declaring itself.
I had two separate MRIs that showed lesions (the first one that was read as normal had lesions after all). He wanted to order another one and then we would start treatment. Low and behold, the MRI was pretty much clear. All the lesions that were previously there (they had changed between 1st and 2nd MRI and then disappeared altogether) were gone. There were a few tiny changes but he decided that we needed to do a neuropsych eval to show insurance we had ruled out all differential.
At that point, I was frustrated... A week later, I started with horrid visual blurring. I called ophthalmologist and he sent me to neurologist-opthalmologist. They found homonymous hemianopsia. (I felt like it was blurring not loss of visual field but apparently I was wrong). He wanted me to see neurologist ASAP. The neurologist wouldn't see me until my follow up 3 months later. So, I saw a new neurologist . He did neuro eval and found "lateralized findings of concern" so he ordered MRI, VEP , and LP.
The MRI showed "punctate white matter lesions of increased flair and T2 signal in subcortical white matter bilateral frontal lobes. Differential diagnosis would include post traumatic etiology, demyelinating disease though certainly not specific".. There were multiple atypically presenting hemangiomas in cervical and thoracic spine (this was previously 100% clear). There was also a low T2 star signal within the cortex of temporal lobe that measures 5mm.
They aren't sure what it is and I am going for CT today for that... The VEP came back borderline. It said it could be suggestive of demyelination if supported by MRI... I am wondering if I would meet criteria... It seems I have 3 different MRI's over 2 years that show white matter changes. The 2nd one showed periventricular. The others seemed more general subcortical. Would the borderline VEP translate to positive in this context ? based on the fact that is said borderline demyelination unless supported by MRI which shows possible demyelination?? Am I just crazy????? My LP is in 2 weeks.
I have has numerous lesions on a MRI that were gone , except for 2, on the next MRI. My Neurologist said, and I am well aware of this fact, that lesions disappear. However, I was told I would always have some lesions that remain and MRIs would never be normal.
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