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Old 09-14-2013, 10:01 PM #1
strizzlow20 strizzlow20 is offline
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Default Long Shot....Just aking for an Opinion

I have been all over multiple forums. My chief complaints are distorted vision and balance issues. This is been continuous since April of this year, but I started noticing vision problems last fall, with tracking and adjusting to distances. Below is a brief history:

2008 diagnosed with Myasthenia Gravis primarily bulbar. MG can, effect vision, however this has been ruled out by many docs. I'll explain a bit further down. I saw an optician in January of 2013 for my vision problems, stated 20/25 with irregular astigmatism in right eye.

April of 2013, woke up and felt off balance and as if the world was slanted. Noticed distorted wavy/moving vision. Shimmering vision, and significant tinnitus with hyperacusis. I have had tinnitus for a long time, this was much louder, especially on left side and I could not stand ringing from tube television. No double vision (which would have been convenient for MG). I went to the local ER, ct scan was performed. I told them the best I could describe it was oscillopsia, I asked if it could be from MG, they said I would know more about that then them. wow. This was on a Saturday.

I call my neurologists office. Doctor gets back to me 2 days later after the problem started, and says to come in that Monday morning. He evaluates me, orders MRI w/wo contrast to rule out MS, stroke, vasiospasms. Evoked potentials are ordered with routine blood work to check for autoimmunce diseases, b12 deficiency, and other things. Only MG came back high. Everything else was clear, MRIs and evoked potentials.

May of 2013 I see a neuro-opthalmologist at the Mittleman Eye Center in West Palm. I have full exam, everything is fine. OCT, glaucoma, and visual field testing is normal. Said maybe stress. (I asked my neuro if anxiety could cause this when I first saw him and he said the symptoms were causing my anxiety. I would have to agree now...) Referred to retina specialist to rule out other conditions.

May of 2013 see an ENT to rule out ear issues that could cause problem. VENG comes back mildly abnormal. Referred to University of Florida.

June of 2013, see Retina specialist and have a special dye injected, retina is perfect. Says my vision problem is odd.

June 2013, neuro says we may want to run MRIs again in 6 months or have a spinal tap to rule out MS 99%. Spinal tap is done, it's good. He thinks MG, refers me to Mayo Clinic to see another neuro-opthalmologist and a neuro muscular specialist.

July of 2013, I have a second set of MRIs done on a Tesla 3 because my neuros MRI was a 1.5. Complete MRI of spine and brain, w/wo contrast, normal.

August of 2013, see Dr. O'Malley at UF for Ent consult. Reuqests CT scan for Superior Canal Dehisence. This comes back clean.

August of 2013, go to Mayo Clinic. Another eye exam is performed, they said eyes look good. Not from MG but don't know what.

August of 2013, I make an appt. to Bascom and Palmer which is the #1 eye hospital in the U.S to see neuro-opthalmologist. This appt. is 9/17/13.

September of 2013 this week. See doctor I was referred to for VENG back in May just to pick his brain. Doctor confirms that I have an eye movement problem evident on the VENG. He does not specialize in eye care, but the test picked up abnormal saccades in right eye, and abnormal optokinetics at 40 degrees in both eyes. I cannot believe the other eye doctors didn't even think of offering testing for this.

September of 2013 this week, I followed up with my neuro. He now thinks I had a stroke that effected the visual cortex bilaterally, it's just too small to see on 2 MRIs and 2 ct scans. I don't think this is likely.


What I have concluded. I think there is an issue in the area of the brain that is responsible for piecing my vision together. I think it's something high in the neck because I have constant pain there. I also notice when I lay on my stomach and tilt my head back, my hearing cuts out about 50% and I can hear my pulse beat in my ears. I get dizzy oftenT and sometimes feel like I am going to pass out. I have never passed out, yet. I've heard about Arnold Chiari formation for a long time now, but I can't imagine this would have been missed. I don't think I have it, but I think I have a problem in the cerebellum. I attached some pics to see what some of you think. The other thing I am thinking, is some kind of atrophy or MSA. The reason why, is I had an abnormal sleep study where I moved way too much in my sleep. The eye movement issue indicates a neurological issue, not an eye health issue. And also the light headedness when standing. I will bring this up in my next appt. Thanks for hearing me out. 30,000 worth of testing has been done easily and honestly, it's pretty scary that a lot of my doctors aren't even aware of the test results they order. I have better records then most of them and have to remind them of things that have been performed or even suggest testing. I had to bring up to neuro, after thanking him for everything he has done for me, that not one person has thought of performing a brain function test such as an EEG. He said I was right and ordered one. Why the heck do I HAVE TO BRING THAT UP? I would think doctors would think of this. Anyways, if anyone has anything to offer, please let me know .
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Old 09-14-2013, 10:13 PM #2
strizzlow20 strizzlow20 is offline
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Just to add, I'm 27 years old as well. I think age is a factor and I noticed when I looked at some of the symptoms of this condition, some of them apply. I notice too, that when I sneeze, especially when I have a headache, I get a sharp ice pick pain at the base of my neck. I do have a c3-c4 bulge that I have know about since 2008 as well. I am also showing early signs of cervical disc disease which runs in my family. I have no other family history of anything neurological, including myasthenia gravis. I know bulge discs can cause neck pain, but this pain is high up, and my scalp tingles too. I have experience numbness and tingling in hands and feet for a couple of years right now. Mayo Clinic has performed multiple EMGs and Nerve Conductive study tests and they were good. I have also been tested for Lyme, twice.


Quote:
Originally Posted by strizzlow20 View Post
I have been all over multiple forums. My chief complaints are distorted vision and balance issues. This is been continuous since April of this year, but I started noticing vision problems last fall, with tracking and adjusting to distances. Below is a brief history:

2008 diagnosed with Myasthenia Gravis primarily bulbar. MG can, effect vision, however this has been ruled out by many docs. I'll explain a bit further down. I saw an optician in January of 2013 for my vision problems, stated 20/25 with irregular astigmatism in right eye.

April of 2013, woke up and felt off balance and as if the world was slanted. Noticed distorted wavy/moving vision. Shimmering vision, and significant tinnitus with hyperacusis. I have had tinnitus for a long time, this was much louder, especially on left side and I could not stand ringing from tube television. No double vision (which would have been convenient for MG). I went to the local ER, ct scan was performed. I told them the best I could describe it was oscillopsia, I asked if it could be from MG, they said I would know more about that then them. wow. This was on a Saturday.

I call my neurologists office. Doctor gets back to me 2 days later after the problem started, and says to come in that Monday morning. He evaluates me, orders MRI w/wo contrast to rule out MS, stroke, vasiospasms. Evoked potentials are ordered with routine blood work to check for autoimmunce diseases, b12 deficiency, and other things. Only MG came back high. Everything else was clear, MRIs and evoked potentials.

May of 2013 I see a neuro-opthalmologist at the Mittleman Eye Center in West Palm. I have full exam, everything is fine. OCT, glaucoma, and visual field testing is normal. Said maybe stress. (I asked my neuro if anxiety could cause this when I first saw him and he said the symptoms were causing my anxiety. I would have to agree now...) Referred to retina specialist to rule out other conditions.

May of 2013 see an ENT to rule out ear issues that could cause problem. VENG comes back mildly abnormal. Referred to University of Florida.

June of 2013, see Retina specialist and have a special dye injected, retina is perfect. Says my vision problem is odd.

June 2013, neuro says we may want to run MRIs again in 6 months or have a spinal tap to rule out MS 99%. Spinal tap is done, it's good. He thinks MG, refers me to Mayo Clinic to see another neuro-opthalmologist and a neuro muscular specialist.

July of 2013, I have a second set of MRIs done on a Tesla 3 because my neuros MRI was a 1.5. Complete MRI of spine and brain, w/wo contrast, normal.

August of 2013, see Dr. O'Malley at UF for Ent consult. Reuqests CT scan for Superior Canal Dehisence. This comes back clean.

August of 2013, go to Mayo Clinic. Another eye exam is performed, they said eyes look good. Not from MG but don't know what.

August of 2013, I make an appt. to Bascom and Palmer which is the #1 eye hospital in the U.S to see neuro-opthalmologist. This appt. is 9/17/13.

September of 2013 this week. See doctor I was referred to for VENG back in May just to pick his brain. Doctor confirms that I have an eye movement problem evident on the VENG. He does not specialize in eye care, but the test picked up abnormal saccades in right eye, and abnormal optokinetics at 40 degrees in both eyes. I cannot believe the other eye doctors didn't even think of offering testing for this.

September of 2013 this week, I followed up with my neuro. He now thinks I had a stroke that effected the visual cortex bilaterally, it's just too small to see on 2 MRIs and 2 ct scans. I don't think this is likely.


What I have concluded. I think there is an issue in the area of the brain that is responsible for piecing my vision together. I think it's something high in the neck because I have constant pain there. I also notice when I lay on my stomach and tilt my head back, my hearing cuts out about 50% and I can hear my pulse beat in my ears. I get dizzy oftenT and sometimes feel like I am going to pass out. I have never passed out, yet. I've heard about Arnold Chiari formation for a long time now, but I can't imagine this would have been missed. I don't think I have it, but I think I have a problem in the cerebellum. I attached some pics to see what some of you think. The other thing I am thinking, is some kind of atrophy or MSA. The reason why, is I had an abnormal sleep study where I moved way too much in my sleep. The eye movement issue indicates a neurological issue, not an eye health issue. And also the light headedness when standing. I will bring this up in my next appt. Thanks for hearing me out. 30,000 worth of testing has been done easily and honestly, it's pretty scary that a lot of my doctors aren't even aware of the test results they order. I have better records then most of them and have to remind them of things that have been performed or even suggest testing. I had to bring up to neuro, after thanking him for everything he has done for me, that not one person has thought of performing a brain function test such as an EEG. He said I was right and ordered one. Why the heck do I HAVE TO BRING THAT UP? I would think doctors would think of this. Anyways, if anyone has anything to offer, please let me know .
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Old 09-15-2013, 04:16 PM #3
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has the dr read those films yet .. you need them to be read ... then you will know if you have it or not
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Old 05-17-2014, 11:49 PM #4
Mrylou Mrylou is offline
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Default it can be missed

They can miss easily. Back in sept.- oct. I was suffering with a lot of neck and shoulder pain. The pain was radiating down my left arm mostly all the way to my wrist. They couldn't figure out what was wrong with me so I was sent for an MRI and shuffled along to a neurosurgeon. They did find a few bone spurs but they weren't touching anything. The neurosurgeon told me that she believed I was in pain but there was nothing in my MRI that could have caused it and pushed me off to physical therapy. They said I had trigger spots in my neck and shoulder muscles. I've also been having massive sinus issues and my ENT decided to put tubes in my ears. I've had a constant headache since that was done about 3 months ago. ENT ordered an MRI of my brain. Turns out I have tonsillar ectopia of 5mm. I decided to take a look at the MRI from October. My dangly brain was as plain as day and because it wasn't brought up in the results by the radiologist she completely missed it.
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