I know it has been a while.........

[Snugelbear]

Hello All, I know it has been a while but I am still on my what feels like a never ending journey with this Optic Neuritis, I finally have my MRI booked for the 24th of July.  I went back to see the eye doctor because my vision is still depleting.  She was very shocked and continued to say to me "I am surprised you see as well as you do"  She has reffered me to see a Neuro Opthomologist.  It is incredibly hot here and I am finding the hotter I get the more my head hurts and less I can see out of my right eye.  Now on the new symptom front, I wake up almost every morning now with a headache, especially on the right side of my head (my right eye has the ON in it)  When I stand , the headache gets significantly worse for about half an hour or so, then seems to subside.  Anyone have any idea what that is all about??  It is like seeing through a screen, it is weird but I am starting to get very worried.  I am afraid the loss of vision will become permanent.  Any thoughts/ideas I am open to hearing anything at this point.  The appointment with the neuro opthomologist is not until the 21st of July.  Oh and btw the Lupus blood work came back negative.
Thanks

Tracy

[silkcut]

Oh goodness, Snugle - 'Hurry up and wait' could be our Limboland motto!

It's really daft how this 'professional protocol' kicks in and manages to stop us getting the tests and treatment we really should be getting. (is it actually ego stuff ? I don't know - it's incomprehensible to me how doctors just don't seem to be able to work together for the px's benefit)

I don't know either if this is any help, but I've had/have ICP, ON, blurred optical discs, reduced vision, reduced blood flow. Not one doc did anything about it but made notes in my med records and told me to take a daily baby aspirin. I do my best not to think about it. (After 6+ yrs I can still see all I want to...)

But it is worrying for sure. I think maybe the best thing is to ask the n/o outright about your vision status and the possibility of permanent damage?
sammxx

[Snugelbear]

HI Samm,

no I don't see the neuro optho until the 21st.  I am hoping that from what I am reading it is not due to an increase in intercranial Pressure.  From what I can figure out the MRI is not going to include blood flow.  I am hoping once I see the optho neuro though he may ask for the MRI to include it.  I do not know how other specialists feel about asking for something in conjunction with one another.  My neuro is a little bit hung up that way.  All of my EVP tests came back normal too.  My biggest concern is the longer this goes on what are the chances of my vision be damamged permanatly!  Oh well I guess we get to hurry up and wait :-(

[silkcut]

Hello Snuglebear

I'm really sorry that you're still on the trek to better health and that there's been no relief for your symptoms. But good news that lupus tests came back negative.

It's good to hear that you have an MRI coming up. I'm wondering if this includes an MRA - to look at blood flow. I'm not sure about any of this, but could your positional effects (headache on standing and headache after lying down for a night) be due to a vascular spasm/pressure problem and low oxygenation?

Did your neuro opthomologist give any ideas as to what's causing the neuritis?

bestest
sammxx