Fresh from Diagnosis
Hi Gang, I'm new to this board. Missy B told me about this ON forum.
I was *just* diagnosed with ON. This has been my year for diagnosis-I was diagnosed with MS in December and had that comfirmed in March.
Anyway, about the ON. I have had headaches at the base of my skull for about 6 months now. I had an IVIG treatment in February which gave me aseptic meningitis. I didn't know that was what was causing the crusing headaches for 3 weeks so I suffered till I thought I was going to die before I went to see my neuro about them.
I went on prednisone for it and got better. Except then I had this other headache. I saw my Ms specialist, her partner and a doc in the ER over this. Eventually my ms specialist sent me to a pain specialist who just diagnosed the ON.
She said she feels the best treatment for me would be to have an Ocipital Nerve Stimulator implant.
The problem is this is not readily available in Canada. It's not common and basically to get Gov't approval, she has to build a case for it for me. Add that to the fact that it's a TWO YEAR waiting list to get the implant and well...ARGH!
So...she did another bunch of injections in the back of my head (holy h*ll does it hurt!) and asked me to try a tens machine between now and my next appointment. She said there are no meds that work well on Nerve pain like this but if I get bad again, I should call and they will fit me in. She said it's possible to get a lidocain drip as an outpatient, but I don't really know anything about that.
Anyway, she says the ON is not part of my MS, but I have a hard time believing that. I got the headache hot on the heels of the meningitis I got after I had IVIG. I've never had this kind of headache prior to having the meningitis. THe ON is caused by imflammation of the tissue surrounding the nerves, the muscle crushing the nerves or lesions. Seems to me that sounds just like my MS! (I have all my lesions on my spine and most of them high up-c2-6.)
Anyway, I guess I have to jump through hoops till the gov't antis up. One thing I did ask was if I got the implant, if I could still have MRIs. She said I could-the control box would just have to be shut off, but where it sits, the images in that area would not be as clear as they should be.
I didn't go into more details with her because, as I said, it's a Looooooog way off and so no point worrying about it just yet.
So...this is where I am at. Between this and the MS, it's wearing thin. What are the chances I would be diagnosed with two major things in a year? *sigh* I keep wondering how I got here.
If anyone has the ONS, I would love to hear what your experience has been.
Anyway, that's me!