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Neuro-Opthamologist Visit

May 20, 2008 - 6 comments

Monday was the follow-up visit to the MRI I had last Wenesday with the Neuro-optho. The MS doctor that ordered the MRI looked me over the same day and had fairly good news. The spot that we have been looking at in my spinal cord was unchanged. There is no growth to the spot in the last 4 months. We have made a change to my medication to help combat the pain. I have a follow-up visit in three months. That news was good to get, really. I was thankful that there were no major changes.
   The Optho-Neuro visit was a bit differnt. Part of me thinks I let myself expect too much, we all know that feeling I think at one time or another. The best thing that came from the visit was I got my patch taken off temporarily as a priosm was put on my glasses so now I can see only one not two. That I am very thankful. I was given two tests to identify my the signals going back to the brain from what I see. Those tests were somewhat below average.
we then looked at the MRI. There it was noted that the blood supply to the 6th nerve in my eye was distorted. The artery (I guess) started in one picture showed fine but as we looked through the the slides it became quite distorted that was noted to be the cause of the double vision. the doctor was very perplexed at this. he said that this was one problem that he could see in my eye. The second problem came from the fact my eye is moving in toward my nose. This was being caused possibly from two things. An injury from long ago (like a hit in the head) or perhaps a tumor growing that is pushing it that way. he asked me to drop the MRI to a fellow radiologist that he knew. On my way home I dropped it off to the new reader. My optho said he would get back to me today, tuesday, after the two had discussed it. This morning I await that call. I give him until 10am for that call then I call him. That in a nutshell is the visit.
    Here are my feelings on this visit and a few of my observations and feelings. I have had 12 MRI's in the last two and a half years. Albeit that some were follow up to the fusions I had, I have a hard time that more answers are not there. We all look for more concrete answers. In the problems I have, I see it like this. If muscles and nerve pain are your intial complaints, and you have a problem in your eye that seems to be muscle breakdown letting you eye drift toward your nose, and nerve / signal reaction be off would you not think all of this is related? The doctors are so quick to say that these two issues are unrelated. I have a hard time getting that. My nubness in my hands, feet , arms , and legs. The pain that is associated with these are all unrelated? Believe me I am no expert but I cannot swallow so well that these things are not "feeding" off of each other. I guess the bottom line is that the limbo feeling that I still have has made me somewhat bitter, and once again the quest for answers has lead to nothing for sure.
  Any comments would be greatly appreciated. God Bless you all.

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405614 tn?1329144114
by Fluffysmom, May 21, 2008

Do you ever feel like you're in that old story about the blind men describing the elephant?

My issues are different than yours, but we are in the same boat.  I have a hard time with the fact that more answers aren't found with all the tests I have had done, too.  I must have had a dozen MRIs in the last year; saw a sports and spine medicine doctor, three orthopedic surgeons, two neurologist, a neurosurgeon, an optometrist, an ophthamologist, my PCP, and a partridge in a pear tree!  :o)  

I've been told that I need back, hip, and knee surgery, then was told that my back wasn't that bad, shouldn't be causing my symptoms, that my knees were in too bad of shape to fix but not bad enough to replace.  I have multiple lesions in my brain MRI, but a clear LP and blood tests, and just a patchy area on my thoracic spine that is most likely just an artifact.  I have small failures on half a**ed neuro exams, my optic nerves are healthy, my VFT was good, but my eyes are blurry and I had an episode of jittery vision this weekend followed by extreme fatigue, but I'm just fine.  My neuro kicked me to the curb because I was there for a MS work-up and she's sure I don't have it, so she's leaving it to my PCP to treat symptoms.

Enough about me.  I'm glad you had good news about the spot on your spinal cord, and that you seem to have a decent MS doctor.  And it is way cool that you got your patch taken off and you can see one instead of two!

I'm sorry that you have to wait for answers; I hope you've called by now and gotten answers from the ophtho.  Oh, yeah, that was yesterday, I hope there was some clear answers for you.  I also hope that someone will put everything together and figure out why your body is doing what it's doing and you get some clear answers on the big picture.

You know that you're not alone, many of us have played the waiting game for longer than we care to think about. When I read about how long some people have waited for answers, I feel like I have no right to complain.  However, I also feel I have the right to decent health care,and that includes answers, doggone it!

Wishing you the best,


487889 tn?1232887189
by Shellshack, Jun 18, 2008
Just read your post.  I just wanted to tell you I can relate, even though I haven't been down this limbo road as long as you.  I have only been through 6 months of testing with no concrete answers, but, like you, feel like something has to be related and seek some concrete answers.  We just have to TRUST GOD and have FAITH.  He is the ultimate HEALER.  We have to pray and leave our health in his hands.  I'll be praying for you and praying you will soon get some answers explaining everything.  Sometimes, I think that with all the weird symptoms we want an explanation, and sometimes, I think maybe God's really speaking to us through the waiting process.  Just wanted to let you know i was thinking of you, and I hope you get your answers soon.

God Bless you today and always!

Avatar universal
by mialyn, Jun 25, 2008
I am new to this sight just today, i posted on it to see if i could get any answers from someone. I read yours and i know what your talking about. I have been going to every kind of specialist there is to see for almost 5 yrs, first they said it was ms, then fybromyalgia, then all in my head from something in the past that is trying to surface, (i didnt go back to that neurologist) to now they are saying possibly mysethia gravis. I have hav MRI's and every blood test out there. I am a 43 female and I have heaviness in my legs and distal arms, now even in my face i also get short of breath very easily and im so tired. If i use my muscles the symptoms get worse and become very painful, i tried to stir brownie mix with my daughter and i couldnt do it because i didnt have the strength.
My heart goes out to you and i hope you get the answers you are looking for and some relief, thats all im asking for but they cant seem to do that, they wont listen to what i say or look outside the box, they are always in to big of a hurry. I will check in soon and hopefully you have good news!

465975 tn?1224231635
by michael1028, Jun 26, 2008
Hello Mialyn,
  First of all welcome to the group. This place is such a great place for support and answers from others that experience the same symptoms and feeling that you do. It seems we can all relate. I I have been going through this state of "limbo land" for almost 4 years. At the present time I am fighting very bad double vision. and alot of nerve pain. I am taking lyica to help my muscle pain.
  Doctors who just don't listen, and as you say do not think outside the box are very fruustrating. I have had 12 MRI's in the last two years. All show no signs of MS but I still carry all the symptoms.
  Thank you for the kind words, I hope you get to feeling better too. Please stay in touch. Support from each other helps as much as family support. Bless you Mialyn.

Avatar universal
by smurf5584, Oct 30, 2009
I am so glag to have stumbled upon this website. I am a 45 yr old femaleI have had symptoms of dizziness, nausea and headaches for years. I have had several MRIs, cat scan's, EEG's,blood work, a hide a scan, several ultra sounds, hearing tests, and numerous other tests without any solid answers. My problem is that I feel like I am moving 'All' the time. Someone will be talking to me and as I am focussed on them they will start to move and sometimes as I'm looking at them and listening to them it's as though I'm hearing them while holding my head inside a balloon. Other times when I'm walking I feel as though I'm not moving or moving off to the side.  After about 4 hour's of trying so hard to focus and battling the dizziness, I get extremely phatiqued and have to lay down. Once I get back up after laying down for a while I feel really good until I start walking around again and the entire thing happen's all over. My first documented case of dizziness was back in 2003, when I went to the emergency room for the ddizziness and neasea. Back then it was happening every once in a whie. Now it happens every time I move. It has totally crippled me. I cannot spend too much time doing anything without feeling as though I will throw up.Migraines have been rulled out since light's and loud noices do not bother me and the headache is the last symptom to show up. MS has also been ruled out along with any inner ear problems. Can anyone relate to this. I am at my witt's end with this.I have basically put my life on hold and not by choice. So I understand completely what everyone else on this site is going through.

Avatar universal
by lost259, Apr 16, 2012
Wow, kind of excited to find this group. Im not even sure how I found it. I was referred to a neuro opthamologist (never even heard of one before) I live in rural Idaho and have learned I must travel out of state to even find one. I have suffered from severe migraines for almost 5 years now. I had a change in the headaches a few monts ago and one left me almost blind in one eye. MRI shows the optic nerve to be in good shape. Eye doc says my eye ball is in good shape but the front of the eye is not communicating with the optic nerve in the back. Therefore I can see but it is like the lights are out. This is common except it usually comes back with 24-48 hours after the headache goes away. I was sent to a neuro because the MRI with contrast had shown white spots on my white matter of the brain and they wanted to rule out MS. The very RUDE and expensive neuro said no MS and started me on an entensive treatment of Topomax and Amitriptiline. They are causeing such huge side effects and I still have the headaches. I have begun to have peircing pains in my good eye and I am frightened that I will loose the sight in that eye also. I have lost my quality of life all I want to do is sleep in a dark room.

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