Unexpected turn of events

[Poppy7402]

I had an appointment with my gastroenterologist last week to talk about the whole gluten ataxia/Celiac thing and quite literally came away a stunned mullet !!  It would seem that they (PCP, Neuro & Gastro) are fully expecting me to get an MS diagnosis at some point in the future.  There just isn't enough evidence to nail it down yet.

To make things even more interesting, I obtained copies of all my MRI reports today as I've been curious about the fact that the latter ones mention a lesion in my cerebellum and state that they are unchanged from previous.  However, the first MRI makes absolutely no mention of a lesion in my cerebellum.  I'm now about to order a copy of the MRI as the cerebellar lesion is glaringly obvious in the third MRI, even to the uneducated like me.

What on earth is going to happen next?

[HVAC]

I had a MS Specialist look at the same MRI and say I clearly did not have MS and then a few months later looking at the same MRI say I absolutely had MS. Same MRI and same Doctor. I thought I was in the twilight zone. What changed was I had a LP which showed MS and had been through lots of tests which showed I did not have other illnesses.

I think the way Neurologist's think is you do not have MS until they decide you have MS by the evidence.

I never go by radiologist. They missed Cancer on my liver and spleen and thought I had breast cancer from CT Scans. I just go by what my doctor's say now.

Alex

[Poppy7402]

I received a copy of the actual MRI yesterday.  Lo and behold, the lesion in the cerebellum was present in the first scan, it just wasn't reported.  It makes me wonder what else wasn't reported now.  I'm thinking about sending my films to a relative in Oz who works in neurology and might be able to get someone to look at them for me now.  

In the meantime I'll head back to my PCP to have a chat about my (new) ptosis and get yet another script renewal for pain meds.

[supermum_ms]

Ahhhhhhh doctors just love to stun the heck out of we little mullets......what's next i'd think would be waiting for more evidence or as Laura mentioned, discuss if CIS is a viable option to start treatment or consider getting another opinion.

Hugs......JJ

[Lulu54]

Wow - just when you think you are out of the woods with the MS thing, there it is staring you down. If your neuro believes you have MS you can always ask about CIS (clinically isolated syndrome) and perhaps they would start you o treatment now. I don't know how that works in NZ but it is definitely FDA recognized here in the states.

Good luck with this next step.  Laura