5
Jul
update on nyc visit
no answers, confused. need spinal tap. eyes dilated. tired. hungry. yep! gonna get me some retail therapy!
~ tracie stier-johnson {facebook post 7.7.10}
Discouraged? Sure. But I’ve been there before.
I’m feeling much better today than I did after my appointment on Wednesday. So what happened you ask?
Well … he’s not convinced I had Optic Neuritis in the first place. Seriously. I don’t know about that!
He’d like me to get a spinal tap. I do agree with this. Almost every doctor I’ve seen has wondered why I haven’t had one.
And … he thinks I may have an inflammatory disease like Sarcoidosis. Um, yeah. Doesn’t quite sound like the symptoms I’ve been experiencing.
Anyway. I’ll be getting the “lumbar puncture” and we’ll go from there.
But … some good news! I seriously don’t know what we were not thinking! One of CJ’s good friend’s, wife {follow that?} is a neurologist. So CJ called emailed him up and also found out that his wife sees 25 MS patients a week! So we’re sending her my scans and an outline of my history over the last year and a half, and we’ll also send her the results of the spinal tap.
Stay tuned …
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*sigh* if i’m ready for you to be undiscourage, i cannot imagine how much YOU want to be undiscouraged! all i know about sarcoidosis is that it is a weird & wacky thing. my husband had it for several years and now it is gone (yay) but i remember the dr telling us it just shows up, and then it might just disappear. sarcoid was a better diagnosis for us than the cancer they thought, an now it is gone. see? weird. anyway, glad youa re going further & checking with more and more drs. i am praying for an answer… an answer would be good.
My first thought is….”bummer”, but I know that with each of these little setbacks/frustrations also allows for a new opportunity (and new doctor!) to come forward. Hope the retail therapy helped. :)
praying you get an answer…
Praying for you my dear friend. I hope you have a wonderful weekend.
Oh Tracie,sending hugs your way!!!! Praying you get some answers.
HANG IN THERE LUV. ANSWERS WILL COME…IN TIME. OODLES OF FEEL-BETTER HUGS TO YOU FROM ME!!! =)
Some how, some where, there has to be a silver lining or answers for you. I’m waiting, as are you….
Wow, Tracie. I can’t imagine what you’re going through. I’m sure you didn’t expect to hear that at all. But good for you for getting lots of opinions — it can take lots of pieces to put a puzzle together. Keep the faith, girl.
I am so happy that you will be getting this test. I had two in the very beginning, which is what cemented my diagnosis. It is not my favorite of tests…take someone to hold your hand! However, hopefully this will bring some more clarity. And yay for a neurologist friend! I love it when a new set of eyes looks at something that maybe someone else didn’t see.
I really need to get you my story asap…i didn’t forget…I’m just so tied up in boys. all. the. time.
Love you Tracie! Good luck with everything everything everything!!!
How frustrating . . . and all this time you still are struggling with your symptoms. I hope and pray that you find the answers you need soon. Please take care of yourself and continue to pursue this until you get some answers. Love you!
my very good friend is a neurologist as well. let me know if you need her info. hugs.
These are amazing in every way. Excellent eye you have. Thanks for sharing. Loved them all.
I can’t even begin to imagine this roller coaster ride you’ve been on. You are so strong!! That GOOD NEWS- how FANTASTIC!! I’m praying that you have GOOD news from NOW ON!
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