It's been a long time since I posted ( several months). I have not been diagnosed with MS but have been recieving monthly iv IGg. MD says "neuro autoimmune disease". My question is, is the supratentorial region of the brain and corticomedullary junctions the same as subcortical white matter? This is where I have a few scatter foci located. I am going back in hosp. today for re-peat LP and 48hr VEEG and re-peat neuropsych. eval. The radiologist read MRI as no change from prior MRI's which is great just curious about location. Not feeling any better with iv IGg actually feeling worse. Thanks for your help. MB
Hi, MB, It's good to see you back, but I wish you had better news. I don't understand the "diagnosis" of Neuro Autoimmune Disease. Can't he be a little more specific? With the IVIG treatments, it makes me think of CIPD, but they have few white matter lesions - it is a peripheral demyelinating autoimmune disorder. I do know that some people treat MS with IVIG and there are some, but inconsistent reports of symptom improvement, but not of slowing of disability. So I don't really understand what you're being treated for.
The "supratentorial" portion of the brain is the cerebrum. The brain has two major compartments. The thinking brain, which is what most of us picture as the brain itself. This is the tops portion with the thicker folds. It sits on a membrane called the tentorium. Underneath the tentorium is the cerebellum, the littler wrinkly guy that coordinates stuff at a more primitive level. So supratentorial lesions are lesions in the upper part, the cerebrum. Saying there are lesions there tells us nothing. It is a huge area.
Corticomedullary and Subcortical, I believe , do indicate the same area. I'm not 100%. This is a common area for MS lesions, but when they are there only, neuros tend to think of ischemic disease. MS can present in any distribution, but with some being more common and easier to identify than others.
I'm so sorry that you're doing worse. I had hoped for much better news. I, too hope your LP went well. The 48 hour VEEG is an in-patient isn't it, so they can videorecord any suspicious epeisodes on the EEG. I had one of those for 72 hours during which I was withdrawing from Ativan, so I hope your's is more comfortable than mine. I also had a neuro come in and laugh at me when they determined my vertigo episodes were not true seizures, so I pray for a doc with compassion, too.
Thanks for all the information. I was discharged from NYU on Saturday. The LP went o.k but developed terrrible headache, just kept drinking fluids mostly caffeine. My doctor really never clarified "Neuro Autoimmune" i guess that is a diagnosis of uncertantie. He thinks it is an inflammatory process effecting the brain. I had PET scan several months ago before the start of IVIG which showed hypometabolism in the left temporal lobe.
Well not sure about the VEEG, this is my second one, the on-call doc seems to think I am having small frequent seizure activity, they also repeated the neuropsych. eval. I have a feeling I did very poorly. They discharged me with lamictal but told them I wanted to wait to see my own doctor and know what all the final tests results were (LP, VEEG, Neuropsych. labs: ANCA, C3,C4, cardiolypin antiboldy, Rheumatoid factor, Lupus etc.)
They weren't too happy with me but so what!!! I've waited this long whats another 2-3 weeks.
I wont get this month tx of IVIG I'll wait for all the final results. MRI of brain 1wk ago showed no significant change which is good.
Thanks for everything you all are so wonderful. Excuse all the typos...
Hi, I've been trying to come up with some real thoughts for you.
If you are having frequent, epileptic type events from the temporal lobe, that really needs to be treated before much else. That is often the location of partial seizures which can really mimic MS. They can be very weird.
I think your neuro is "copping out" by calling this an unknown inflammatory disease of the brain. But, in his favor, he is doing a good work- up.
I maybe have been wrong when I said the corticomedullary fibers are the same as the subcortical. There are a group of fibers known as the subcortical U-fibers that reach across the junction between the cortex and the medullary (middle white matter) part and these are often targeted by MS. The subcortical area is strictly below the cortex and is also hit by MS, but is also a favored site of ischemic or vascular problems like high BP or migraines. There are so many terms for the locations in the brain that I get lost.
I am so sorry I missed getting this to you before your neuro visit today. Shoot! Please be sure to tell us all about the results of the visit!
Saw neuro. today he said that my VEEG was significantly changed from previous one done in April of last year. The previous one showed spike waves this time it shows definate seizure acitivity some lasting as long as 3 minutes. Again he attributes this to "inflammatory process". My spinal tap and labs were all negative although I didn't see the actual reports. My repeat neuropsych. eval was slightly worse which he is attributing to seizure activity. MRI of brain was unchanged from previous one 6 months ago, agian showed small white matter foci ( I believe 2) he says "non-significant". I'm 42 yrs. old. Although when he looks at all thats going on including PET scan showing hypometabolism this is where he gets his ? dx. I questioned him again today, he said they are seeing more and more of this "neuro autoimmune Inflammatory process that they just cant label". I don't know I'm starting to question myself with all this. I guess I will start trileptol tomorrow and see how I feel several weeks from now. I have a follow-up apt. in a month.
Do you think it's unreasonable to ask for MRI of the C-spine and T-spine? I had one aabout 8 months or so and it was negative at that time? Or am I reaching for straws?
He wants me to continue with IVIG for 3 more months making a total of 6 months, feels we need to give it the full course. He also wants me to start trileptol and slowly increase the dosage.
Thanks for listening I'm just frustrated at this point.
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