I've posted once before and have not been diagnosed with MS but I've been suffering from a huge list of symptoms for years that are consistent with MS. About 3 months after I gave birth to my daughter in 2009 I started noticing visual changes. Reds, greens and browns weren't as vivid and light, especially sunlight, hurt my eyes and I would complain of really strong glare when no one else noticed it. I was having a lot of muscle twitches and felt feelings of vibration in my tongue and teeth so after a visit to my PCP, I was sent to a neurologist. He did a thorough exam of my reflexes and listened to all of my symptoms that I had then but also suffered from for years and suggested a Brain MRI with contrast. I had it done and the MRI was normal. He said he was confident I don't have MS but didn't have any other answers for me. Since then, I've still suffered from my symptoms - tingling, skin and scalp sensitivity, numbness, constant pain - and my problems with my vision have gotten worse. Glare is unbearable and colors definitely aren't as vivid as they're supposed to be. My question to the group is this. Can problems with vision be a result of a problem with the spine? Everything I've read about optic neuritus is supposed to show up in opthomolgy exams or Brain MRIs but opthomologists keep telling me my optic nerve looks healthy. Could my problems be a result of something going on in my spine that wouldn't have been picked up on the brain MRI? I haven't yet had an MRI of my spine.
About 60% of the cases of Optic Neuritis (ON) have NORMAL ophthalmic exams. The only part of the optic nerve a doctor can see looking in your eye is the optic disk. About 40% of he time (bulbar ON,) the Optic Disk will have a pale border. ON along the Second Cranial Nerve deeper the cerebrum (retro-bulbar ON) cannot be seen by looking in the eye. Many times, a lesion effecting the optic nerve is too small or silent and will not show up on an MRI. There are other indications though. An MRI of the spine will not provide any diagnostic information related to Optic Neuritis.
An abnormal Visually Evoked Potentials test showing latency with a well preserved waveform is one. There may also be a decrease in the "caliber" (diameter) of the Optic Nerves or Optic Tracts on MRI but many time, this is missed unless there is a specific request to evaluate the Optic Nerves.
Decreased color saturation perception is one of the signs of ON. Issues on the brain stem and cerebellum can effect eye movement and the coordination of information, but the Optic Nerve and ON has nothing to do with the spine or brain stem. Cranial Nerves One and Two are the only Cranial Nerves that terminate in the Cerebrum. The remain 10 pairs of Cranial Nerves terminate on the Pons of the Brain Stem.
With your vision issues, I'd see a Neuro-Ophthalmologist or request your Neurologist to order a VEP. I'm also wondering if your Neurologist is a General Neurologist, or an MS Specialist. I'd really look for an MS Specialist vs. a general Neurologist.
Thank you so much for this response. It's more helpful then any of the responses that I've received from the many doctors I've seen. I did go to a neuro-opthalmologist back in December of 2009 and had a VEP done but everything was normal. Is it possible to have optic neuritus but still not find anything abnormal on the VEP? I'm seeing a neurologist but he specializes in headaches (not sure how that referral happened - I just called to see if I can get in with a MS specialist). Now that it's been over a year since my last MRI and VEP I'm thinking I can argue for another brain MRI with a request to examine the optic nerve and another VEP? My vision is worse and I have pins and needles on and off as well as constant pain and problems with night sweats and my arms and feet falling asleep and going totally numb in my sleep. I'm just so frustrated and feel like each doctor brushes me off and I just want to find an answer so I can start doing something about all of this!
I was diagnosed my a general Neuro in early November with a range of things. My vision diagnosis alone were optic neuritis and internuclear ophthalmoplegia (where you eyes don't follow the same track.) My general Neuro stated my EEG, EMG, CT scan and MRI were normal; except I pulled the reports and my CT scan reflected multiple areas of decreased density/demyelination and if there was strong clinical symptoms they recommended an MRI. My MRI report states it was normal but neither my general Neuro OR the MS specialist actually looked at the digital scans. They just looked at the report.
I, luckily, opted to get a second opinion with an MS specialist here, he ordered a VEP to confirm diagnosis. I had that 10 days ago. The RN who gave the test indicated an abnormality in my left optic nerve but the final results by my MS specialist will be given to me this week. I have vertical double vision in my left eye. I have a small scotoma (blind spot) and a band of visual dimming in that eye as well. Between that and the IO, my vision is giving me a lot of grief. I am uncomfortable. That alone is enough for me to not give up.
At the moment, I know this sounds strange but I am hopeful that a positive VEP will give me answers to my ongoing issues. I'm really not sure well I'll go from here if this is a dead end. I'm preparing myself mentally for the need to pull copies of ALL my tests and seeing my old physician to get a fresh perspective.
Have you had any other tests? I agree with Bob, find a specialist and get some answers. Don't stop looking until you have them or feel better.
..." and problems with night sweats and my arms and feet falling asleep and going totally numb in my sleep."
I get night sweats but I'm confident those are hormone related. I've had those since my son was born 11 years ago. They ocurr toward my cycle.
My arms fall asleep ALL THE TIME in my sleep. It's so annoying. I did ask the general neuro if that was normal. His response, "No." but he didn't give indication if it was a symptom of my current issues.
During the day, I haven't had the this. I have experienced a burning sensation on my left shoulder. Raynauds and the wet/ice cold patches in area's around my body. It is usually my right arm, right foot. I have one patch on my left arm that gets cold as well.
Internuclear ophthalmoplegia can be complex problem is is related to the function of Cranial Nerves 3,4 and 6 (I think - its been a while.) If I remember correctly it is a failure of upward gaze of the eye opposite the 11:00 or 1:00 o'clock position. This is typical of a pons (top of the brain stem) issue. Cranial nerves 3-12 terminate there.
Optic Neuritis is a cranial nerve 2 issue. CN2 isn't associated with the brain stem.
VEPs (flipping checkerboard with the red dot in the middle of the screen) are kind of a touchy test. The delay from the light on the VEP Screen to the electrical signal (P100) at the optic cortex on the back of the brain is normally 90-100 thousandths of one second, (.09 to .10 seconds) for the under 65 crowd. Anything 0.12 seconds or longer with a normal waveform is considered an indication on demyelination of the optic nerve. They use to do this counting the squares on graph paper spitting out of the machine. Now, just like EEGS and EKGs, this is all digital. It is important the the tech have the monitor the correct distance from the subject and the exam must be done several times in a series to average the results out.
The VEP is considered very sensitive if performed correctly. Over time, the VEP can return to normal (and this is usually accompanied by an improvement in vision.) The theory is that this is the result of remeyelination.
Like every other test, this one one really depends on the technician that performs the test and the doctor that reads the test. This is a test I'd always ask for the test data from, not just the doctors interpretation. These tests sometimes need to be evaluated by a Neurologist with a sub-specialty in Electro-Diagnostics.
I think Robert Heinlein may have been mistaken when he said "Specialization is for insects." I'd guess he never had to deal with Neurologists.
Do you have a confirmed diagnosis of MS? I keep getting passed from doctor to doctor and had an MS specialist tell me that I should understand that it's a big deal for her to tell someone that they don't have MS and that I definitely didn't. She spent 5 minutes looking at my MRI film and said my reflexes were jumpy so maybe a spinal MRI would be a good thing to do one day. She basically made me feel really stupid and guilty that I would even suggest MS. I told her it's the only thing that seems to make sense when I research my symptoms and she said that "sometimes the body does weird things". If I hear that from one more doctor I think I'll freak out. I spent some time looking at the posts in "limboland" and guess I really belong there. There isn't really a pattern with my feet/arms/legs/hands falling asleep when I'm sleeping. The only thing consistent is that it wakes me up and that it takes a few minutes of massaging and moving to get the feeling back. I also tend to have really crazy dreams. Does any of that sound familiar to you?
Bob, your advice and your knowledge is amazing. I don't fully understand everything that you suggest but I've made lots of notes and plan on referring to them at my next appointment. I have the cd with the images from my MRI. Do you know where in the MRI I would see an issue with the cranial nerve 2?
No, I do not have a confirmed diagnosis. If the VEP is positive it is an absolute diagnosis as to my having an "attack" last Fall. I will go into the "wait and see" category with MRI's every six months.
When they did the last MRI (in December) I did not have lesions that showed on my MRI. They have ruled out many other things - thyroid, lyme, lupus, sarcoid, neuromusclar diseases, etc. My labs came back so good they removed me off of all vitamin supplements. (My GP placed me on a multivitamin and B complex when I initially complained about feeling electrical vibrations throughout my body and muscle twitching.)
No crazy dreams but I was a sick woman this fall. I really do not want to go through that again. I was super lucky that I had several doctor's examine me during that time. I have not been led to believe that I'm imagining things. I did not pass the Rhombergs test. I had Raynauds. Trouble with extreme temperatures. I could not stand to be in grocery stores as the lighting made me sick. I have left hand tremor's (now my arm.) My vision was whacked. I have pins, needles, cold spots, stabbing pains, vibrations. (Those went away for a few months but have come back in the last two weeks.) My left side reflexes are jumpy. The twitches are primarily on the left side of my body but I do get them EVERYWHERE...and I mean every where.... I had to try to explain to my doctor that at one point I had a vibration/twitch that woke me up from my sleep one night. It was on the side of my head, near my ear. I'm pretty sure there isn't a muscle really there? lol ~
Now, I believe I have Uthoff's as my symptoms are worse after showering and near my cycle. Right now my muscle twitches seem to be an indicator of my health. If there is any stress at all on me (physical or emotional) then those increase and I feel sick again --- I get extremely fatigued, muscles twitch and jerk, my vision gets worse and I ache, a deep ache that sort of radiates down my arm or leg.) Last week I was in a mild relapse so several symptoms popped back up --- right now, my new symptoms is pain and itching in my face. It feels like someone is taking a little needle and stabbing me then I randomly itch. I'm trying to ignore it until I hear from my doctor.
*I* have gone through phases of grieving and have gone into denial but my doctor's have told me not to become discouraged, to keep at it and the most recently doctor told me if I had ANY doctor not take their time to listen to me, to me on. The *worst* I've been told is that "Sometimes, you can have an attack and never have another...The cause is unexplainable." That was from my MS specialist but he also said that if I had ON and my VEP was positive that would place me in a very different category and would need to be monitored. The truth? I had hoped for a virus (and convinced myself that was what it was) but if it was just a one time issue then my symptoms would continue to improve and not fluctuate as they have for nearly a year.
I had my first attack 4mths after the birth of my son. I have always had flashing in my eyes since. Mostly only when I look at a straight line or a blank ceiling. Its like a heat wave, all wobbily. However, my VEP was normal and I had an eye test and my vision is excellent so I have no idea what its about!
I am at this point still with a diagnosis of clinically Isolated syndrome. I have lesions on my spine and brain, though at the last MRI they were said to be fading.
Hi Sidesteps and Suzie,
I know this sounds weird but it's comforting to have others that are experiencing the same frustrations as I have been for so long. Sidesteps, I hope you are able to get some answers after your VEP. It sounds like you have some really supportive doctors. Give them a hug for me! I've had some real doozies who have terrible bedside manner. A therapist finally confirmed that for me that stress does not bring on consistent visual changes and I've had to use her confirmation with a few doubtful doctors. My whole life doctors and family have told me that I carry a lot of responsibility, stress, have a demanding job, etc. but I know that what I'm experiencing is NOT due to stress. Sidesteps, I read your post above and some of the others that you've put on this discussion board and I feel like I could have written them myself. I've also tried to convince myself that I have a virus or a parasite or anything else but ever since I had my daughter and started to have these vision issues, I have a stronger gut feeling that it's MS. It's awful because I just want to be my best self for my daughter and my husband and I can't even think about what all of this can mean for my future as a mom for my daughter.
Suzie, I get the heat wave/wobbily thing too. It also sometimes looks like it's raining in certain lights. That's the only way I can describe it. It's not raining; it happens inside even, and I just have to wait for it to pass. Did you see Bob's comments on the VEP test above? It sounds like the VEP test doesn't always pick up the problems, they're hard to read and the results can change ff remeyelination has occured.
Have you looked at MS MRI pictures on the internet? I think you should. There a couple of them that show what lesions look like in intervals. I can see why MS can be difficult to diagnose in seeing those pictures. They show how they become dense areas, brighter spots then kinda of crackled looking after time has passed. It's all very impressionable. You would really need to have an eye for "imperfection."
Yes, I have had some pretty good doctor's. The two best doctor's that advocated for me was my hematologist/oncologist (I have a hereditary blood disease) who has YEARS of study in internal medicine. He was the doctor who saw me at my worse and spent nearly an hour and half with me. He was very concerned, really listened to me and performed a neurological exam. He was only evaluating my blood levels being off balance a bit (normal for this disease) but I knew he was looking at cancer. He told me at the end he didn't think it was my blood disease or cancer and said I had legitimate concerns with MS. He wanted me to move forward with making the MS specialist appt.
My general Neuro specialized in brain trauma and strokes. He clearly was looking in that direction based on his questions. The first thing he ordered was a CT scan. I am difficult to please with doctor's. I know it. ;) I have learned over time that they are only as good as their knowledge base and the effort they are willing to put into the patient. When he missed the CT scan results that stated "many multiple areas of questionable lower density...that indicate demyelination..." that was when I knew it was time to move on.
Listen to you gut. I've learned that's the best compass. :)
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