Hi all! Sorry I've been AFK.

[Sidesteps]

Happy holidays ~ I have been trudging along - slowly going through the tests my new Neuro has ordered. I saw the Neuro Opth who pretty well said it looks like MS to her. I had my SSEP a few weeks back. I also saw the Neuro-Otologist (hearing specialist).  I've been fascinated with the things I learned.

The Neuro Opth - thinks some of my vision issues are refractive but not all. I had the OCT which reflected thinning. She pointed to the lesions she sees and wants a full new MRI done. (It was planned.)

The Neuro Otologist said I hear perfect and the noises I am hearing in my ears could be the twitching/myoclonus. He also said it could be the pressure changes, hormones or just about anything BUT the weird pain I have inside my ear canal along with my facial pain indicates a cranial nerve 5 "irritation" - yes, MS would explain it all but he said cranial nerves are very difficult to see lesions on. There isn't much he can do for me except try to drown out the clicking and ignore the hearing fluctuations/tinnitis. :)

SOOOO --- I've been procrastinating to go back for the results as 1) I need to keep my sick leave down at work 2) I know I have a full MRI coming up next 3) I'm feeling better and all this won't speed much of anything up as I know she will want to see the MRI before treating me. LOL ~

My right side muscle weakness is troublesome but it's not horrible. I am trying to find balance at the moment. How are you all?  It's been crazy busy here for me between home and work and the holidays. YAY! I love Christmas. :)

Fill me in. What's new???

[Jacksmom516]

Good to hear from you - was hoping all was okay and nothing too bad going on -  The tests never end do they - and I feel you on the missed time for Dr appointments! I went a whole week last week with no appts!
Making up for it though got one today - LP results - one next week and one the following - then it is 2012!  Hopefully a healthier year for all of us!  

Thinking about you all too through the holidays - Be well

[Sidesteps]

ETA:  I think they think the facial/eye pain I'm experiencing is TN. The Neuro-Otologist mention cranial nerve IV. I'm thinking that might explain a lot. We shall see.

[Sidesteps]

I am still here!!! I'm trying to focus on some other things but I did see my Neuro Specialist today to get my results. My SSEP was normal. I think that is good news.  

She asked what I gained from the other two Specialists - I informed her that the Neuro-Otologist said I can hear and my symptoms could be caused by a variety of issues (migraines, barometer changes, hormones, etc.) I laughed. She laughed. I told her that he did say that some of my ear pain and facial pain sound like a cranial nerve "irritation." She nodded.

I also told her about the Neuro-Ophth. She confirmed that the Neuro-Ohpth indicated that some of my symptoms might be a worsening of refractive issues BUT that my OCT test indicated thinning and was on the low range of normal (which is not normal for my age.) LOL ~ I am to be monitored closely and she felt another MRI is warranted.

I told her that I have been feeling pretty well; except I have had an increase in symptoms this last few days or so. I had another round of eye pain/headache but that it is kinda difficult to describe the pain. It is not like a typical headache or even a migraine. It surrounds my eye and the skin sensation is different. This pain lasted nearly 10 months. I asked could it be a migraine? She asked a few questions and said "No. It sounds like nerve issues."

This is a good time for an MRI so we are going to do that right away.I will have a full thoracic and brain MRI with and without contrast and more labs to see if there are changes. I go in on the 30th for the MRI and meet with her immediately after to get the results. I knew I have lesions, we will see if they have increased and maybe catch if I'm flaring.

I am thinking of you guys through these holidays. Wishing you much joy and warmth. (((hugs)))

[sarahw244]

Here you are!  I've been wondering what happened.  I was getting worried!  I'm more than happy that you have been doing well and that you weren't gone because you were in midst of a big flare or something.  

As far as I go, I think you read and commented on my post.  I can say that I am definately disappointed about what transpired at my appt, but I am keeping an open mind and seeing what the doctor says about it tomorrow.  He's a pain specialist, but he also specializes in fibromyalgia so if that is what I have (or don't have), I think he will be able to tell me pretty quickly.

Sounds like you are getting close to a dx too?  That's great!  A dx means treatment, and that's all any of us really want, right?

Anyways, I'm really glad your back!  Don't be a stranger!!!
(((hugs)))
Sarah

[jibjen]

Hey,

we have missed you..So glad things have been going well for you and you seem to be narrowing down to a dx. Me? I am working with my doc to start a DMD in Jan. We will meet in Jan to discuss. MS..

I posted about my last appt. (please read) I love my doc. I am stable right now but we discussed starting a DMD because I do not want to progress..as isn't that the point? He is so respectful of my idea and he is so supportive. We are both doing our homework. He encouraged me to educate myself on MS and Avonex, the med he wants me to take..

So that's where I am at..

I feel like I can love Christmas again this year too..;o)

Jibs