How incredibly frustrating!
I'm sorry.
Can't imagine dismissing the docs at John Hopkins.
Having said that, it still could be too early for a clear diagnosis from them. My feeling -- dxes take longer with socialized medicine and anywhere there is oversight (military) -- they have to be able to justify their diagnoses.
Even with a dx of probable ms, that is not an diagnosis of ms. It means "it is more likely ms than another option but we aren't completely convinced yet because (not enough information? Lesions don't look textbook? Some other reason).
Assuming that the military doc's are still following you, you have reached the stage of limbo that is the most disheartening. I'm sorry.
So an update, I was hospitalized from June 3rd-June 11th. I went in for what I thought was an allergic reaction to topamax. At that point I was on 25mg and had only been on it for 3 days. When I got there they did a ct scan which showed questionable loss of gray-white matter differentiation involving the right caudate and anterior limb of right internal capsule with associated asymmetry of the frontal horns. The put me on a 1g infusion of solumedrol for 5 days and did a full work up. MRIs showed hyperintensities and DWM lesions in my right frontal juxtacortical. I was discharged with a diagnosis of probable MS. This came from Johns Hopkins and their neurology team. Now that I am back to my own doctors (military residents) they can't give me clear diagnosis and I'm back in limbo, with no treatment plan or idea of what is wrong. They also completely discredited the Hopkins doctors... Input please
Thank you very much, I really appreciate you sharing your experience with me. I will let you know what the neurologist says after I see him..
I have one juxtacortical lesion .. and worked in the pesticide industry for years. One neurologist told me that the chemicals I worked with definitely could have been the trigger for developing autoimmune issues (I was not diagnosed with ms at the time, although this neurologist felt I had ms and I was diagnosed several weeks later by an ms specialist).
Hi and welcome,
The toxic exposure you've experienced is not generally something that has been specifically associated with neurological conditions like MS, so it makes me truly wonder if what's happened to you could have more to do with what can happen with occupational pesticide exposure-poisoning, than an actual disease.
It's very common to find a standard list of differential diagnosis's, which includes demyelination when the lesions are non specific, but what little you've posted from your MRI is a bit different to what we typcialy see, sorry this might be more confusing than helpful, i'll try though......
'subjuxtacortical' is a bit odd, sub-cortical, literally means "below the cortex" and if in both hemispheres its actually a very common findings and related to many types of more common conditions eg migraine etc. juxta-cortical is describing the area between the the cortex and the white matter, Juxta" means it spans the junction between the two regions and limit's causation significantly, MS definitely being one of them.
Juxtacortical is 1 of the 4 MS Mcdonald criteria locations BUT the radiologist stated 'sub-juxta-cortical' which by my lay persons understanding is saying it's both below and spans the cortex and i really don't know enough about it's meaning to even guess if subjuxtacortical would be suggestive of something like MS or not
A couple of weeks isn't really a long time to wait for a neurological appointment and MRI explanation, though it will probably seem far too long a time, but try if you can to keep open minded and not let your curiosity get the better of you...
Hope that helps........JJ