Can I get some opinions? I'm a bit worried :-(

[lovemy6monkeys]

I have had minor eye issues for the last 5-6 weeks. It has been a constant low-grade headache behind my left eye. My eyes seem to tire easier, and large blocks of words will start to swim around while I read and I will have to keep refocusing. Sometimes the headache behind my eye would be more painful and it would radiate to my ear and upper jaw. This isn't too bad when it happens, and I will take tylenol or ibuprofen to help. Though that does not take the pain away, it makes it go back to a low-grade pain.

I had the eye and ear pain going on when I saw my PCP a week & a half ago. He did not look at my eyes (not sure why) but he checked my ears to rule out an infection and said they were clear, not even showing any sign of possible infection. He thought the ear pain was related to the behind the eye pain & asked if I was ok with talking to my neuro-ophthalmologist about it since I have an appointment already set for this Wednesday. Since the pain is not too bad, I was fine with waiting.

Now, this is what has me concerned:
Yesterday the pain radiated to my ear again. Last night my husband & I were reading in bed. The room was well-lit. I told Dennis that my ear was bothering me again, and I was hoping my bedtime dose of gabapentin helped so I could sleep because it was hurting more if I laid my left side on the pillow (I tend to sleep on my left side). Dennis looked at me and said my pupils were huge. He said both of them were fully dilated, where he could only see a small ring of my iris. In contrast, his pupils were very small (the room really was well-lit).

The pupils did not shrink down, and I ended up going to sleep about an hour later.

Today my pupils are back to normal. The ear pain is also gone. But my eyes, especially my left one, just feels off. When I'm reading, on the computer or a book, the words are a bit blurry. I can still read them, but they are not focusing sharply like I'm used to. That is the most noticeable thing, but I just feel like my eyes are not right and I'm not sure exactly why.

I'm trying not to worry, because really it is not too bad. But, my biggest fear has been losing my vision (my friend with MS loses her vision when she has a flare-up).

Any idea what would have caused the dilation?
Is it ok to wait till my appointment on Wednesday to talk to my neuro about it?
Are there tests I should expect or insist on my neuro doing?

Thank you for any ideas or thoughts.
~Jess  

[Lulu54]

You are jumping just right today, twopack, and saving my fingers the work!  I feel like a broken record saying the same thing about these do-nothing doctors so it is great to take the break and let someone else lead the charge.

Keep it up ....... who is next?

[twopack]

Are you pleased Lulu or did I jump too big?

Mary

[twopack]

Jess, I was just thinking about you today.  Want to know why?  I'll tell you anyway.

I was wiping some crumbs off the kitchen counter.  They were on the small space that is left over in front of my pile of stuff-to-do-soon.  (It's been growing there for maybe a month?)  As luck would have it, most of the stuff is paperwork.  (Can you guess what's coming now?)  

As I swept the crumbs away, a piece of paper sliced under the nail on my right ring finger with surgical precision.  I'm pretty sure I'll be able to pick out the offending wood product from the trace of red pigment I left behind even though gobs of it got washed down the sink.  I plunged the near amputation into ice water only to experience a spasm that traveled right up to my shoulder.  When I applied a pressure dressing (actually a napkin) the dog nearly mistook it for the biscuit she was anticipating.

Suddenly, I remember a topic about being taken down by paper cuts authored by you!  I mention it to the hubby but he just doesn't seem to have the same light bulb over his head that I do.  Imagine.

But I should get onto why I mention this here instead of looking up that older topic.

It seems to me this is yet another sign that you understand to be meaningful but you fear will be under appreciated by the docs.  I can relate because on repeated visits to my ophthalmologist I have explained to him that I cannot see as well as his techs exam says I can.  

I can indeed sit there and figure out letters on a chart.  Given enough time I can discern which ones are real and which are duplicates.  Fortunately they are spaced so that they don't overlap one another (as they do when I try to read).  

I tell him that sometimes I use the top of my bifocal at the computer, sometimes the bottom and sometimes no glasses at all.  What is best differs by the day.  A few weeks ago he gave me a new (slightly different) Rx for new lenses.  I won't get it filled because what was good that day won't be better than what I already have on most days.

I have read that with ON (which my VEP revealed) patients often report vision that is worst than refractive exams detect.  I'm sure you already understand what I'm telling him even though the doc remains clueless after hearing my complaint over and over.  I don't expect him to be able to fix it anymore (now that I know it's the MS and not my advanced number of years) but I still hope he will hear me someday and indicate he is an eye expert and knows this happens.  (sigh) I wish validation by professionals didn't hold such high value for me.

For you, recognition of your observations and validation of your husband's independent report by the doctors is vital.  I agree with Lulu that exam of this huge paper cut can wait until Wednesday.  Chances are it won't even be visible by then.  Maybe you have reached a point when hubby needs to go along with you and (in a man-to-man club way) explain to these docs that he needs to see something more pro-active in their approach to your multiple and repeated symptoms.

Simply stated (something which I am rarely accused of) this doctor needs to s*** or get off the pot to make room for someone who can.  I believe the mimics have been ruled out in your case?  You are trying to move ahead with your life.  You have six children to care for and little enough time without these repeated appointments for idle chit-chat.  

You have tracked your symptoms for some time now and it is clear they are multiplying.  How about telling the neuro you would like a stab at the same type of tracking system being done while you take a DMD?  After say a year or two you could compare the results and re-evaluate?  

Hope there is something that makes sense in here.  Things seems to be clicking along in my brain today but I'm not sure it's spilling out smoothly.  I know I've fallen off the On-and-On ANON wagon several times today already.  When an addict to hyperwordagraphia has a relapse it is very time consuming for everyone.  But the saddest thing?  It gives a perceived validity to leaving the stuff-to-do-soon pile on the counter for yet another day.

Take a fog horn to your next appointment and make those doc listen up and jump into action (or threaten them with torture by paper cuts).

Mary (who's saving for safety again)

[Lulu54]

Jess,

In my opinion, which as you know is just purely my guess, I would say you are ok to wait until Wednesday.  It doesn't sound like you are in an emergency situation.  Besides, in neurologic time, Wednesday is really fast! LOL

Something I ask everyone who has pain in the eye- any chance you have dry eye?  I did and the drops make all the difference in the world as far as stopping the pain. I wrote about it in my journal if you want to know more.

http://www.medhelp.org/user_journals/show/127600/Remembering-my-own-words?personal_page_id=

I hope someone else will jump in here with some suggestions.

best, Lulu