Pardon me but your post conjured up images of Willy Wonka and the children who protested "but I don't want to...." but they never objected to empirical proof.
Not working with the physical strain you have been through is a good thing, right? Your boys are grown and scattered and now it is time to focus on Chris. Right?
You know so much about this crazy disease as well as so many other neurological disorders, I won't pretend to offer you sage advice about pursuing a diagnosis. Somewhere out there must be a doctor who can pin the tail on the donkey. Right?
The vision problems., the leg problems and everything else that is a problem for you just cries out for an answer. I keep hoping you are pulling the golden ticket and getting your answers. And soon.
Despite your frustrations, I am so glad to see you rejoin us here and share your journey. You know you are not alone.
Hey Zilla, i'm glad your back here with us too and funny enough i think i do get where your coming from, "i dont want to....." um yeah i get that though i'm not sure "want" is the right word. You could be stuck in that revolving door, declining with out the dx, no drugs to combat the cause but drugs to minimize the sx, minimize not fight the disease causing the sx, hense the revolving door ideology.
I have my moments of 'enough' and i start focusing on getting back to dx but then 'this' life thing gets in the way, and i dont have the drive to get it all set up whilst i'm just trying to plod along. So more time goes by and then the cycle continues lol not what i'd recommend but still thats the reality of it.
I dont get the waiting for 6 months with your sight, um wait for what exactly, i dont get waiting and can only fathom that its not clear what the problem is, or what the cause is, could it be macular degeneration or ON so the rational is if its macular degeneration it'll get worse but if its ON it might improve? sorry i dont get the wait to treat for sight at all!
Anyhooo just wanted you to know someone here's you!
I'm so sorry you still aren't getting any help. And sorry that your right side is starting to be included in the party. It STINKS!!!
The sight in my right eye is almost gone, and I know how scary that is. When the doc who did my EVP's last year asked if I could even see out of it, I just shrugged and said occasionally. He said the test was showing that there was NO sight in that eye due to the MS lesion on my optic nerve.
It's almost a year later and still no treatment or dx from the neuro. Just his comment of, "You have MS, I just want more clinical proof".
Like you, I don't want any more tests, I just want someone to step up and help me with some kind of treatment that will keep me from going totally blind and ending up in a wheel chair.
As always you are in my daily thoughts and prayers!!
Loved reading the update on your boys - so sorry to hear however, of the addt. loss of eyesight, and leg weakness.
Get your fanny in that scanning machine when you are up-to-the task just so long as it doesn't interfere w/family time of course :)
Praying with you for the right medicine, and for the docs eyes to see it as it is :)
Wow, Zilla and Doni on the same day! Good to see you both!
Zilla, that just blows with the right leg weakness, and your eye, too? Nuts! I hope your neuro can find some help for you. Maybe physical therapy for a while? One of the new mobility aids? I'm just throwing ideas out, here.
I love hearing about your sons. I kind of live vicariously through the next generation. If I had the $$, I'd be traveling around the world, right now... :-)
Good luck in finding some relief! Thinking of you...
Wow, you too, girl!!! I love seeing all these cl's come through and I hope you will stay longer. We love you and miss you here.