Neuro-Ophth Appointment

[Sidesteps]

This Neuro-Ophth office specializes in a variety of things.  They also have the OCT machine and a few other rare test capabilities.  The ophthmalogist I saw last December wasn't a Neuro just a regular Ophth.

Will they go over my symptoms starting a year and half ago like the Neurologist did?
What can I expect? Would this be an acceptable format to mention? (See below symptoms)

This is my list of concerns:

Fall/Winter 2010:
(Right eye)  eye pain with movement. Behind the eye/interior. Lasted 10 months. Still feel mild pain at times.
Foggy vision
Reduced acuity
(Right eye) Peripheal vision disturbance
Scratchy sensation in my eye (lasted 4 months.)
*Doctor noted my right eye isn't following my left eye right as well as ON symptoms.

February/March 2011
Noticed Double vision - left eye, vertical ghost image; right eye, lateral ghost blurry;
+ double vision with both eyes together worst episode lasted 3 hours (in September)
Small black dot in upper center field of vision (this gets larger when having a bad day or in the heat)
Asymmetry between eyes/face *asked doctor about Bells Palsy but it was discounted*
Sensation change surrounding right eye/face
Noticed the whites of my eyes appear mild to moderately bloodshot

May/June/July 2011
Noticed color vision/saturation differences between eyes. (Red, Green, Browns, Yellows are most noticeable)
Right eye feels heavy
Episodes of right eye having shading things so dark (nearly blind) when sun was out.
Eyes seem to have trouble "finding" target or uncoordinated at times.

Current:
The multiple types of double vision is my largest concern. (Double vision in my left eye is constant, the ghost image just isn't as far off during times of improvement.)
Double vision with both eyes open is becoming more frequent.
Driving at night is a concern.
Visual acuity is still not improved.
Color saturation differences - intermittent and ongoing.
Asymmetry between eyes and possibly face - intermittent and ongoing.
Right eye peripheal vision still off but improved.
Left black spot still here (still fluctuates with heat/sun/various.)
White of the eyes still bloodshot - worse right now.

Random - Should I mention my concerns with muscle weakness? I think there is right sided muscle weakness as well as neck and baby carrier muscles. These doctor's specialize in Myastenia Gravis as well.

[Sidesteps]

http://en.wikipedia.org/wiki/Optical_coherence_tomography

There are other's here that know more. I am not fully sure of what it does but I know it measures atrophy and axonal loss of your optic nerve....errr, I think. :)

[Udkas]

Hi,
Thanks for the update, it does sound like you are in very good hands and had a very thorough appointment.  Heat usually temporarily worsens MS symptoms, google Uthoffs phenomenon or sign.  So I would not  try the hot yoga and yes years ago before we had MRI often the neuro would make people sit in a hot bath to see if it worsened their symptoms. Thank goodness we don't have to do that anymore.

What is an OCT, I am very curious about this test and what it is used for.

Thanks for sharing, I really do hope that you get some answers soon, it's great that they are taking your MRI and symptoms seriously .

Cheers,
Udkas.

[Sidesteps]

Just back from the Neuro-ophth. I LOVED her. I feel like I am in such good care now. Yay!

She ran the visual field test, acuity, color test and the OCT! She spent about 30 minutes talking to me, running neurological eye examinations and reviewing my MRI then went over the results.

Here is the scoop --- she doesn't feel I am in a flare up right now and my tests came back relatively normal.

She is not concerned about my double vision in the indivual eys. She thinks that my not being well has created fatigue and the LASIK "haze" and astigmatism are more pronounced. She would like me to try mild powered reading glasses to see if it will reduce some fatigue and ease my discomfort there.

She is concerned with my double vision that I see with both eyes together. She is concerned with my color saturation changes as well. She said the INO (which is gone at the moment) could have created a lot of my symptoms and that weakness is causing the double vision together. If my symptoms get worse, I am to come back in immediately.  

She reviewed my MRI's and feels I have several lesions she can see. The one in the perventricular region that is as clear as day. She also pointed out a couple other areas that appeared to have smaller lesions. She wants to have a repeat MRI and is glad that my MSologist had intended to do that so she doesn't have to request it.

She asked about my other tests and if I had a LP and VEP.  I told her the LP was negative and gave her the VEP. She said, that a VEP is anitquated in testing for optic nerve damage. She said it used to be that they used those because MRI's weren't all that easy to read. The OCT is the new MS measuring tool even over the MRI now. She feels LP punctures tend to give negative results if you are not flared and since it appears I'm early in the disease process it would be negative.

My OCT test reflected some borderline atrophy. My results should have been in the 90's for both eyes but they are 82% and 86%. She said it's POSSIBLE that is normal for me but with seeing the MRI she supsects MS. She for sure feels I need to be followed closely.

I spent nearly 2 and half hours with her. She instructed me that I can't do hot yoga (I tried it this week) and to stay cool. I told her I was trying to push through and see if I could acclimate. She told me that heat will in some cases actually flare and damage the CNS, that is why they stopped those hot bath tests years ago. She wasn't at all surprised that I react to heat/sun.

Truth be told, I felt I got a preliminary diagnosis today or at the very least validation. She DID say that it's possible some of my symptoms could be headache related but the MRI tells her I need to continue being vigilant about MS. I am thinking I received confirmation, no? Never the less, I feel I am officially in the right hands. YAY!

Has anyone else had OCT and if so did they have borderline atrophy? I am not sure about the 82% - 86%. I can't remember which eye is worse. I was so thrown off by her pointing out my lesions (that were MISSED BTW on all my MRI's) and the information she was giving me. lol ~

Thank you all for you support, you all are awesome. :)

[Jifr]

Hi Sidesteps:

I hope you get the answers you're looking for.

I saw a neuro-opth shortly after I was diagnosed.  I spent about...3-4 hours in the office for that visit.  They do a TON of tests.  

My favorite was the egg shaped hood thingy.  Lol - Not a technical term.  You sit in a dark room, put your head inside it and watch for little blinks of light.  You will have a clicker in each hand and have to click when you see the stars.  I think you also had to click on the SIDE where you see the stars.  Or, little blinks of light.  I thought of them as stars.  LOL.

Anyway - kinda silly I know.  But they were so thorough, very nice and very considerate.

I hope you have a positive experience as well.

Jen

[Sidesteps]

Thank you both. I am super excited and anxious about the appointment tomorrow morning. I am hoping for some help and answers. We shall see.

Lulu, I have really significant issues and very surprised I haven't seen a Neuro Ophth sooner.  I just kept getting bounced around. I think it's because they thought I had seen a Neuro-Ophth last December but he turned out to be a regular Ophth; so that is when the MSologist referred me out to this specialist. Yay!  

I think I probably needed to be followed by one all year. My vision is a mess. The sad thing is I had LASIK 5 years ago, I shouldn't have ANY of these issues. My vision was better than perfect a year ago. :(

[Udkas]

Hi,
Best of luck for your appointment, I will be very interested to see your update as I have many of the same problems as you with double vision being pretty bad at the moment.  My vision problems have been blamed on migraine, in my case I do tend to agree with that diagnosis, but I have had no colour change.  My double vision seems to be getting worse.

I think your list is great, I have done a similar thing for my doctor but because it's been a long time since i have seen him I have written way too much.  Include anything as if you are going through a diagnosis process things that we think are irrelevant might be very important.

Good luck, your list is concise and not too long for him/her to read.

Keep us posted.
Udkas.

[Lulu54]

Sorry we didn't see this earlier today.  If I were you I would take the list that you have outlined above and share it with the neuro-opthamologist.  There seems to be lots of significant vision problems that need to be pursued.

Good luck with this next round,
Lulu