MS results are back

Got my MS results back today: negative! It's great news & I am thrilled and relieved, but at the same time part of me is disappointed, frustrated, and a little angry. Don't get me wrong, I did NOT want MS, I would never wish that on anyone, but I want an answer! It's been over 2 1/2 years, and things only continue to get worse! I want to know what is going on & I want to have actual, real treatment options.

So now we're back to not having a clue what is wrong, other than that something is wrong with my brainstem, among other components of my eye. The current thinking is that it's either some yet unidentified CNS or ocular/brainstem disease, in which case it's just a wait & see game -- wait & see how this progresses & hope for clues, or it's something like reflex sympathetic dystrophy. Except no one knows if RSD can happen in the eye & my neuro-ophthalmologist, at least, doesn't even want to entertain the idea. I need to speak with my primary ophthalmologist, so that we can try & come up with a new plan. He had mentioned trying a series of injections to my pcp (for the pain) & the meds the neurologist put me on did nothing for my nystagmus, so I need to pick his brain about that too. I wish he didn't take so long to return phone calls! It usually takes him a week if it isn't anything urgent. I called last week, so two more days of waiting, and then he gets a pleasant reminder phone call. I know it takes him so long because he is at odds about what to do as well. He probably dreads hearing from me as much as I dread calling him.

In other news, I got my Kindle today! I had to come home to see my osteopath & there it was, sitting on the kitchen table waiting for me! I just spent the last two hours fooling around with it & already downloaded a bunch of books. I think I was a little too ambitious (considering my current reading abilities), but I just got so excited! I tried the text to voice feature (which is what I will be using most of the time) & it's not bad. It's about the same speech style/pattern as the reader that I have on my phone, for translating text from books, magazines, etc into audio. No comparison for a human voice, but pretty good nonetheless!

I hope tonight finds everyone well!

Skeye

Skeye

I know your test results are bitter sweet, I do know what it is like to have something wrong and not know what it is. But hang in there. I am glad you don't have MS! I do hope the Doctors can eventually find out what is wrong and give you some relief.

I wish you only the best!

Have fun with your Kindle, I have researched them they sund neat, I would not mind have one myself!

White Beard

Oh Skeye,

I'm happy and sad at the same time for you!  I have to agree with what PALady said!  Hang in there honey, they will figure it out someday soon! 

I too am so glad you got the Kindle!!  ENJOY!!

XXOO
Patti

 

Afternoon Skeye!!!

 

     *huggs* What a releif!!!! I am so glad. But also... more confused. You have so many of the same exact symptoms. Im left scratching my head.    You must be very cofused as to which path to take now. *huggs*

 

     WooOOT! For the Kindle! I hope you got a leather cover for it. rememebr to sign up for the amazon daily. And IMHO USA Today and The New York Times are the best two formatted for the kindle. I decided to stay with NY Times I like the formatt better. The recipe look up is very handy , keep you little plastic key cover for when you are cooking. And remember if you come across a book that wasnt converted right send them an email to the address on your "screen saver"the one with the email adress will eventually be one of the screen savers that cycles through. Usually only takes a few days for errors to be corrected. They are VERY good about refunds too.

 

*warm huggs*

     dani

Thanks everyone! I really am thrilled that it's not MS. It's just that I'm frustrated, because I was hoping that all these tests would give us some more guidance. I know that there are lots of people out there, like me, without a diagnosis. And I suppose it doesn't really matter, as long as you can treat whatever it is. Just the problem is, we haven't been able to & don't know how to treat this! I think it's also a matter of acceptance. I know we've discussed this topic before, but I don't think that I can fully accept & come to terms with this until I know what it is.

Thanks for all the tips re: the kindle, Dani! I'll have to do some more fooling around with it tonight. I just got out of the lab & I've gotta run to go have pizza with my aunt & uncle now!

Skeye

Skeye, I wanted to wish you good luck on your Fall term and hope your course load is light...
Keep us posted with up dates...
Lots and lots of soft hugz...
Hope the pizza with your aunt and uncle was fun!
((((((((((((((((((((((((((((((((((((((((((((((Skeye)))))))))))))))))))))))))))))))))))))))))))))))))))))))
yur friend,
Chart

One of the bigger cats is finally starting to play with the kitten (Dimitri), so that's a good start...

Skeye,
We're getting some real heat and humidity here in the Great Lakes this weekend - maybe it will make its way to you! I agree, summer weather has been more like fall!

So maybe the time you have off will be like summer! I hope you get some good R&R!

hugs,

PaLady