Welcome back, Tw-chick.
I can't remember if you mentioned in the past having your eyes checked by a neuropthamologist? Have you seen one? You should. You need your eyes! It sure is hard to deal w/pain you describe and try to remain calm. Sounds like you did the best you could given the situation. I for one dilly-dally w/issues too but know it's best docs see what you are experiencing in realtime.
My initial thoughts are that if you can get to one, describe your symptoms only w/out putting a possible name to them, i.e., lhermittes, or TN, etc. Best to keep to the concerning symptoms and let that steer the docs evaluation.
Happy New Year to you, too!
The "classic" Optic Neuritis (ON) is pain for 2-3 days, worse with extreme lateral (Left Eye looking far left) eye movement. Pain will then reduce with visual changes that may include loss of visual acuity, loss of contrast, changes in color perception (typically reds,) central scotoma (loss of a field of vision.) The most reliable detection method is VEP. On exam, about 40% of ON cases will have a NORMAL eye exam.
Thank you Shell and Bob.
I have an appt with a "head pain neuro" in July. That was the soonest I could get in. But my regular GP can at least up the dose of the Tegretol.
Bob, today is day 3 and so far, no pain. When it first happened it was like the ligaments holding my eyeball in place were stretched too far. Or a blunt pick was jabbing from behind. It was in my left eye and hurt most when I looked left. The sharp pain decreased over time and then it would only hurt when I moved the eye.
Shell, I had a regular optometrist (I think) visit when the black zig zags started. My vision was normal. Well, for a 43 year old. Still need my readers, however, they really bother me when the face pain begins, can't stand them on my nose. So I bought a lighted magnifying glass.
I just remembered that before the pain began, I had tingling in my left hand, kind of like it was asleep. Also, trouble talking. Not so bad that others noticed, just like my tongue was too big.
I see my GP on Monday so I will ask about a possible referral to the neuropthalmologist.
I know a lot of my symptoms can still be explained by atypical migraine. They are just so different from the migraines I've had since I was a kid.
Bob, do you have TN and ON? How are your symptoms now? I don't know what my face pain is, but I do feel a swollen lump above my ear when it is at its worst. I'm wondering if it could be a vein? Inflammation of something? I don't know if TN truly fits. I am able to wait out my pain and I understand TN is too painful to not have an abort med. I knew from a previous post you had TN. Also wondered about cluster headache. Doesn't exactly fit but I'm still in the "rule out" phase.
Thanks again for both of your input. Just when I convince myself it is one thing, a new symptom shows and then I start questioning everything all over again. At least I have ruled out a few things along the way. I really appreciate ANY info!!
I had ON back in March '10 and TN starting in Aug.'10. RRMS was diagnosed on 11/12/10,
If you can get into a Neuro-ophthamologist that is your best bet. They may order a VEP since it is very sensitive to early ON. My last MRI (along with showing new lesions) showed a "...slight decreased caliber of the left optic tract and right optic nerve..." My TN has two types of pain. There is the ache like a toothache from above my ear across half of my upper teeth. Then there is the lightning that will cause half my face to contort and "scrunch up" and cause me to drive off the road if I'm driving. I literally have to pull over!
I feel like I could've written your post about TN! All the way to the middle of my teeth. I was just driving home from church, talking to my hubby on the cell and just out of nowhere...BAM!!!
He knew right away what had just happened. It is so scary when it is just me and the 9 year old in the car. A neuro on the migraine forum told me that if it is hemiplegic migraine not to drive too much. Well, easier said than done since I live over 8 miles from the nearest town! Too bad I fired my driver and the limo is in the shop. (Wink)
I really appreciate what you and Shell said about the neuro-op. I will see if my GP can refer me on Monday, when I see her. Also, I am sorry about the diagnosis, with all that it brings. But I am glad you finally know what is happening and can start treating. Are you on DMD's yet?
I am so thankful to have all of the knowledge of so many informed people on one forum. I learn so much every time I check in. Thank you to all!
Yes. Just finished my first 30 days of Copaxone. I opened the second box yesterday.
Do you still take Tegretol for the TN? What has provided relief for the ON? I presently take 400 mg of the Tegretol but it does not give me the relief I need...YET! That's why the appt with the GP on Monday. I know my dosage is very small compared to what it can be raised to, so I'm hoping for a bump up.
How did you do on the Copaxone? Any side effects? Does it take a while to feel the benefits? Hope it continues to do well for you!
Did you ever notice any relation to caffeine and your TN symptoms? Just wondering if my morning coffee is making my afternoon symptoms worse. I think it is and I'm trying to cut that back even more.