neuro appt. today and PA set up an MRI of Orbits (no question) just update

[drsdonthelp]

I am shocked! Today was a day I dreaded because I had to go see my neuro. He usually is the one always with the prescription pad in his hand telling me I have anxiety and sending me out the door within minutes.  Instead of his bubbly face, and me practically squirming in my seat, his PA walks in.

She asked me some questions about how my seizures have been, and I told her that I don't exactly know how to answer that, because according to Doc. S.. my slurred speech is considered my seizures that last for weeks. She started to rummage through my folder and said ok, I see, you have had 4 abnormal EEG's and he believes that your having a misfiring of your brain and its getting stuck for some time.

I proceeded to show her my report from Rochester neuro appt., I wasn't going to bring it up but since it was her and not him, I felt that this was my chance.
When she saw that the VEP was abnormal and being "consistent with demyelination" she asked me if anyone ever bothered to do a MRI of my  orbits? I said, I have had them done on my c-spine, lower spine and brain. She said, well, we need to set you up for a MRI of the orbits to see what's going on there. (I tried to sit calmly and not act too excited)

Then she began to do the test...
When I held my hands out, she saw the left hand tremor, she wants to run an iron blood test to see if I am deficient.
She had me touch my finger to my nose and I didn't get the tip, I touched where the rim of my glasses sit across the bridge of my nose, I did this with right and left hand.
Then I had to stand with my feet put together, and close my eyes... I tipped over to the left side. ???? I told her that this happens to me often, especially if I don't have my glasses on with the prism, I will close one eye to see one image and if I close the left eye, I fall, the right eye I could close and not fall.
she then said, You have double vision?, and I told her that I also have an eye disease and have had 4 eye surgeries the last one being in Feb. I told her how my eye muscle surgeon told me he could do surgery again to realign my eyes, but wanted to see what's up about my neuro. stuff first because he does not want to do surgery to correct something that might be caused by something else and it would make things worse. She agreed.

My appt. today was better than I expected, I asked her if I could see her regularly because I like her, she smiled and said thank you and absolutely. We did talk about the whole klonopin/anxiety/tremor stuff that Doc. S tried to give me, and she said, for some reason, "we all have anxiety" (meaning us women) LOL I couldn't believe it!

I am scheduled to see her in 4 weeks to go over MRI and bloodwork, she also said that with my ssd review, she will definately be a part of doing the write up in favor of my conditions getting in the way of working.

Today was a good day at the doc's, Yay!!
Pam

[drsdonthelp]

Hi Kelly, Thanks! It's not very often when I leave the dr's office with a smile instead of tears. She does seem to want to help me.... I think, I hope.
I am going to be optimistic about this one. Every other neuro I have been to has mentioned anxiety or fibro/central sensitzation, too much coffee (lol) The things they come up with crack me up!
For her to say to me,"We (women) all have anxiety" gives me pure faith in her that she truly sees that something is going on and NO ONE can figure it out.

I am also going to try to set up an appt with a LLMD even though my Elisa test was negative, I have read that it is not always accurate. I did have one of the co-infections of lyme which was Bartonella... I will get to the bottom of this if it's the last thing I do. No one, (except for all of us on this forum) really know how much we go through daily, without the obvious signs to the outside world.

Take care Kelly,
Pam

[anon07072023]

I'm glad that you had the opportunity to speak with her. Maybe she will be the one that can really help you out.  I hope the MRI of your orbits will help them determine what is all going on.  It's always good when you can leave a doctor's office feeling like they really listened to you.

-Kelly

[drsdonthelp]

Hey girls,,,,,, Thanks so much, and I hope I have some news to share that can shed some light.

Pam ( aka ) Flipper :)

[MonkeyMom4]

YIPPY!!!!!! I'm so happy for you!

It's about darn time!!!

There is something amazing that happens to yourself when you feel that someone is listening and validates what you are going through.

Again, I'm so happy for you!! =D

[Sidesteps]

Woot! Woot!  

I am so happy for you. I really like PA's and ARNP's for their listening and care for this reason, they are very thorough typically.

Please tell us how the enhanced Orbit MRI goes.

(((Hugs)))

[LisaJF]

I'm so happy that you were listened to! Finally!

I agree with granny -- what a relief! Huh?

Let us know (as I know our little flipper will) how it goes with the MRI!

lub ya!

Lisa

[grannyhotwheels]

That is so awesome!!!!  What a relief it is when that first one finally listens to us and believes us... I'm so glad it went well for you... Be sure and let us know how it's going...

I'll be praying,
Carol

[drsdonthelp]

Hey there Alex!! Love that you call me Pammy, my whole family calls me that!! LOL

Thank you, and yes, I am happy! It's about time!! I hope she stays this way, because she really was a nice person/doc.

Maybe she will be "THE ONE" LOL,  ( I know, I shouldn't count the chickens before they hatch)

MRI, next week,,, I guess we'll see!!!
Pam (Pammy, or Flipper as Lisa nicknamed me) ha ha

[tingletingle]

I am so happy for you. I can hear the pure joy in your post at someone finally taking the time to listen to you and back up with neuro tests. This could be the start of something beautiful, I hope so for your sake.

Thank you for sharing your journey.

Blessings
Alex