Unusual Case? Advice Requested

[aytpicalsymptom]

Hello all,

I have just created an account and I am hoping to solicit the knowledge/experience of the patients and doctors (?) on this board. I am 28, female, have been dealing with "strange" visual symptoms for over a year. This includes "flash bulb" type effects, transient (days-weeks or occasionally permanent?) small shimmering spots and blind spots in my field of vision. These effects occur on and off in both eyes, but not simultaneously. There is never any pain associated with these effects, and they are very difficult to precisely describe.

I have visited two optometrists and two ophthalmologists/retinal specialists and they cannot find any cause of my visual symptoms after fundus photos, OCT, etc. Recently they referred me for brain and spinal MRI to "rule out" neurological problems. The spinal MRI was normal but the brain MRI detected small, scattered lesions in the periventricular and subcortical white matter, with one lesion on the corpus callosum. The radiologist report said the lesions were "non-specific" but high on the differential diagnosis list is "demyelinating process."

I saw a neurologist who basically said that the MRI looked quite suspicious for MS, but my neurological exam at the clinic was normal. (I have never had any neurological problems in the past to my knowledge.) He said he does not believe that my eye problems are caused by optic neuritis, or are related to these lesions on the MRI, because my eye symptoms do not really match the clinical symptoms of MS. The lesions are non-enhancing on the MRI, which means they cannot explain my current eye problem (a small scotoma in the right eye that has been there a bit longer than a week.) He does not know when the lesions formed.

I am very shocked by the lesions on my MRI, and even more concerned because there seems to be no apparent cause for my visual symptoms, unless this is some very strange presentation of MS/optic neuritis. I am being referred for spinal tap and VEP but in the meantime, I would like to know if anyone else has had similar strange vision symptoms prior to diagnosis with MS.

Thanks so much.

[hunterd]

HELLO AYTPICALSYMPTOM, WELCOME TO MSWORLD!!! . Have you seen a neuro-ophthalmologist? They may be able to answer more questions than the others.
Just because your lesions are not enhancing does not mean that the symptoms you are experiencing cannot be caused by them.
I did not experience any "strange experiences" before my diagnosis. Do you have any other autoimmune diseases? The reason I asked that is because autoimmune diseases often, but not always, occur multiple times in the same person. In other words, autoimmune diseases like company.
Hopefully someone can give you some of their experiences and help you out some. I wish you the best!

[aytpicalsymptom]

hunterd,

Thanks a lot for the welcome and for your response to my questions. I am in the process of setting up an appointment with a neuro-opthalmologist, but I don't know yet when I'll be able to be seen.

I don't have any (diagnosed) autoimmune diseases, or any diagnoses of any diseases at all...or any symptoms that might correspond to the lesions on my MRI, except possibly the strange vision issues, which my current neurologist thinks may not be linked to the lesions. In fact, he does not want to diagnose me with MS yet definitively, because he says I don't have characteristic clinical findings.

I have been wracking my brain trying to think of any past neurological episode that could explain my lesions, but nothing at all is coming to mind. (I know lesions don't always cause symptoms.)

From reading this forum, it seems like it is somewhat common to have symptoms, and no lesions initially on MRI...often people must wait to see lesions develop on subsequent MRIs to get an official diagnosis. Has anyone else ever had the opposite - no symptoms, or uncharacteristic symptoms, but MS-like lesions on MRI?

[SNOOPY]

Hello aytpicalsymptom and welcome to MSWorld.

Has anyone else ever had the opposite - no symptoms, or uncharacteristic symptoms, but MS-like lesions on MRI?

There is a name for this --- Radiologically Isolated Syndrome (RIS).

This is when a patient goes in for a MRI for a reason unrelated to Multiple Sclerosis and the MRI indicates demyelination which could possibly be Multiple Sclerosis. This may or may not turn into Multiple Sclerosis.

[Myoak]

Hello atypicalsymptom,

May I ask if your current neurologist specializes in MS? It appears MS is a suspicion and finding a doctor who specializes in MS may help a great deal in establishing a diagnosis regarding it.

IMO, other neurologists, no matter how qualified, lack the expertise of one who specializes in MS, regarding that disease. A diagnosis of MS can be very nuanced and unless it is overt and blatant a non-specialist may miss it or be slower to recognize it, IMO.

Obviously, something is going on with your eyes, and there is a suspicion MS may be involved, for me that would be enough to seek out an MS specialist no matter how inconvenient or what distance was involved.

It would be interesting to know your Vitamin D level, characteristically it is low and frequently extremely low in people with MS. Of course, a blood test can show what your level is and I would certainly look for that on any results you may already have.

Another thought is that people having vision problems can't hurt themselves and may help by taking B-complex vitamins, these appear to benefit sight.

Also, may I ask if you have had a neck or head injury in the past... auto accident, trampoline when you were young, or any damage, even mild to the craniocervical junction?

Lastly, it is frustrating and worrisome to the max facing your situation and that aspect may take a physical toll; of course you will continue pursuing answers but always remember to give yourself a break and allow yourself to rest. Everything will unfold, never quickly enough for comfort but it will unfold, and answers will come. Let you mind be at peace as much as possible so you will think as best as possible and your body will experience less stress. I'm sure you know all these things but gentle reminders can't hurt.

Best wishes!

[aytpicalsymptom]

Myoak,

Thanks for your kind message.

My current neurologist does not specialize in MS. It seems that getting an appointment with an MS specialist in this area takes months!

I know my neurologist ordered a test of my vitamin B12 levels - don't know about vitamin D. The results of the lab tests are still outstanding. I'll have to look into that.

I was pretty active as a child - climbing (and falling) from trees, etc., but I haven't had any diagnosed head injury, or even a suspected one that I visited a physician about. (Pretty lucky in retrospect.) My spinal MRI did say something about significant straightening of the cervical spine and mild disk disease, which in the context of the other findings, I wasn't concerned about.

SNOOPY,

Thanks for providing me with this term, which I have used to do a great deal of research about my current situation and prognosis.

[Robinsnesth]

My first lesions which gave me the diagnosis of Probable Benign MS were changed to probably caused by past smoking. Apparently lesions can be caused by different things.

[JerryD]

Hi and welcome, aytpicalsymptom. It seems like there is a typo here. You have been given some good advice, here. I think there may be a few more tests to determine if you truly have MS. I hope that you get all of the tests that exist to rule in, or out, a diagnosis. Good luck

[jreagan70]

"Unusual" and "atypical" can be slippery words because they're sometimes used to justify the forcing of signs and symptoms into a diagnosis where they don't belong.

For example, your visual symptoms aren't acting like optic neuritis associated with MS. And your brain lesions aren't characteristic enough of lesions associated with MS for the radiologist to identify them as MS-typical lesions. So even if your neurologist thinks the lesions are suspicious for MS, the radiologist can't classify them beyond being nonspecific, and that means there are other possibilities for them that you haven't indicated have been discussed or evaluated.

Right now there isn't an apparent cause for your visual symptoms, but you haven't been worked up or evaluated completely. Without supporting information, there's no indication that a group of nonspecific signs and symptoms should be forced into a diagnosis/declaration of MS-related optic neuritis and justifying it by calling it atypical.

Your neurologist is premature in saying that your non-MS-like visual symptoms aren't related to the brain lesions because he's dissociating them by prematurely assuming that the lesions are from MS. There are other possibilities for the lesions for which your visual symptoms might not be unusual.

The spinal tap and the VEP are logical next steps, but it sounds like you also have to be evaluated by an MS specialist and a neuro-ophthalmologist because your neurologist may already have (remains to be seen) -- and the eyecare specialists definitely already have -- gone as far as they can within their specialties to evaluate you. You might even need to see other specialists.

From what you've told us so far, you need more consideration of other possibilities, more testing and more specialty evaluation. Until all of that has happened, it's premature to decide that what you have is MS and then try to make up for a lack of supporting information by calling it an unusual or atypical case.

[aytpicalsymptom]

Robinsnesth,

Still wondering if there is a more "benign" cause; however, several things have been ruled out, including migraines, which are a common cause of nonspecific brain lesions.

JerryD,

Indeed there is a typo! My account was made in haste; need to find a way to change my username.

jreagan70,

Thanks for your post. However, please note that I nowhere claimed to definitively have (rather, I inquired about the possibility of) MS with an unusual presentation. The "unusual" in my title was followed by a question mark, so I don't think I'm leaping to any conclusions here. In fact, looking back at some paperwork from the neurologist visit, my current diagnosis is "demyelinating disease of central nervous system, unspecified" so it seems like MS is a reasonable, though not certain, candidate.

[odin1243]

"FLASHBULB" effect in eyes

Hello all,

I have just created an account and I am hoping to solicit the knowledge/experience of the patients and doctors (?) on this board. I am 28, female, have been dealing with "strange" visual symptoms for over a year. This includes "flash bulb" type effects, transient (days-weeks or occasionally permanent?) small shimmering spots and blind spots in my field of vision. These effects occur on and off in both eyes, but not simultaneously. There is never any pain associated with these effects, and they are very difficult to precisely describe.

I have visited two optometrists and two ophthalmologists/retinal specialists and they cannot find any cause of my visual symptoms after fundus photos, OCT, etc. Recently they referred me for brain and spinal MRI to "rule out" neurological problems. The spinal MRI was normal but the brain MRI detected small, scattered lesions in the periventricular and subcortical white matter, with one lesion on the corpus callosum. The radiologist report said the lesions were "non-specific" but high on the differential diagnosis list is "demyelinating process."

I saw a neurologist who basically said that the MRI looked quite suspicious for MS, but my neurological exam at the clinic was normal. (I have never had any neurological problems in the past to my knowledge.) He said he does not believe that my eye problems are caused by optic neuritis, or are related to these lesions on the MRI, because my eye symptoms do not really match the clinical symptoms of MS. The lesions are non-enhancing on the MRI, which means they cannot explain my current eye problem (a small scotoma in the right eye that has been there a bit longer than a week.) He does not know when the lesions formed.

I am very shocked by the lesions on my MRI, and even more concerned because there seems to be no apparent cause for my visual symptoms, unless this is some very strange presentation of MS/optic neuritis. I am being referred for spinal tap and VEP but in the meantime, I would like to know if anyone else has had similar strange vision symptoms prior to diagnosis with MS.

Thanks so much.

I have had MS since 1976, but was not diagnosed until 1988, when an MRI did confirm the diagnosis. I have had a couple of unusual eye experiences. The first was in 1982 when my vision appeared as if a flashbulb had gone off right in front of my eyes. I couldn't see at all out of my right eye as everything appeared very distorted. I have amblyopia in my left eye, but it didn't seem to effect that eye. I did go see an ophthalmologist at the time, but I don't think I had a confirmed diagnosis. At that time I had had a number of experiences of numbness, tingling, etc., but no confirmed diagnosis. this "flashbulb" effect lasted a couple of weeks. Then again in the early 1990's I had a similar experience, although I only lasted a couple days. I saw a ophthalmologist, but he wasn't quite sure of what it was either since by the time I saw him my vision had improved.
In 2008 I was having some other eye difficulties, so I saw a ophthalmologist. He did a lot of tests, similar to the ones you described having. I He showed me the results and how the optic nerve fibers had been effected and confirmed that I had had at least of couple of episodes of optic neuritis. When I had these episodes I didn't have the "typical" effects of optic neuritis but more of the "flashbulb" type.
So, I don't know if this has been helpful, but I do understand what you mean about the "flashbulb" effect, and hope by now you have a better idea of what is going on with your eyes.