This Is MS Multiple Sclerosis Knowledge & Support Community

Hello.

It is a little difficult to be writing a "hello" message to fellow MS sufferers I have been diagnosed with MS for 2.5 years, and this is the first time I have been able to bring myself to openly discuss it with others. Have you ever heard the saying "denial is the best medicine"? Well, that has been my mantra, unfortunately, for too long... it's time to admit something... I have MS, and there is nothing I can do to make it go away.

Phew! That is harder than it should be.

I am an eye doctor, and if there are any questions I can answer relative to optic neuritis or other visual symptoms you have, I would be pleased to do so. My own life change began with ON:

About 3 years ago, I developed pain around my right eye with eye movements. I had no visual symptoms, so I passed it off in my own head as sinus pressure. The pain subsided after a few weeks, and I forgot about it. A few months later, it returned. I had a specialist I work with dilate my eyes and do a thorough check of my optic nerves, and all was normal. We were confounded as to why I was having pain around the eye, especially with eye movements. The first rule out in a case like that is often optic neuritis, but I had no visual deficiencies to correlate with the diagnosis. However, just a few days later, I developed the classic "foggy vision" one gets with ON.

Being an eyedoc, I knew I had ON. I remember telling my wife that the #1 reason a male of 28 years of age would get ON was MS. Sure enough, several visits to a neuro-ophthalmologist and an MRI and lumbar pucture later, I was diagnosed.

So go figure... the eyedoc got ON as his first clue to MS. Maybe this is some form of cosmic symmetry

Anyhow, I just wanted to say "hi", and if there is any questions relative to your eyes, I would be happy to do my best to answer. In the meantime, I will continue reading the excellent forums here. It does take a load off to know there are others with similar problems.

As we all know, MS is no respecter of persons, anyone can get it;I am sorry that anyone has it. We all have our moments of despair (if not, we wouldn't be human), but you will find encouragement, hope, and people actively searching for answers at this website.

We contribute in our own ways and appreciate your offer to help as you can. Welcome aboard. I (and others here, too, I know) don't think the boat ride will last too long--there is lots of research going on.

hey ED!

very glad you are finding some comfort from the reading here.

my first attack started jan 24 2006 and after a week of evoked potentials mris and a lumbar puncture they had my fun diagnosis on feb 1 2006. needless to say i'm still in denial and aren't most people for a while? so you're certainly not alone there! i am still convinced i shall vanquish this condition and take all the checkmarks off my doctors' checklists. including the stupid oligoclonal bands in the CSF!

that's so nice of you to offer your expertise, i'm sure some of the gang will take you up on it!

ttfn

Hi EyeDoctor,
Would aprreciate your wisdom.

Mid December the vision in my right eye became blurred, peripherally, no eye pain but increased headaches. Feel like vision is grayed. Hard to see in bright light, and at night. When I get up at night I have a large black area with bright edges. Occassionally get pin point bright lights.

Saw eye spec - he could see partial vitreous detachment, but said it had been like that for a long time, scarring was evident. On further testing there was red/green colour vision lost.

I was referred to a retinal specialist who is excited as he can surgically fix the detachment! BUT I am worried it may be optic neuritis

In March I woke with stiff, sore legs and arms and extreme fatigue. Surgery is planned for 30 May, blurred vision, fatigue and sore body makes my work impossible.

I saw a rheumatologist who thinks (not his field of course) that vitreous detachment probably due to head injury some years ago. He put an urgent referral through to a neurologist. I will see him 25 May.

I don't want to get "hysterical" written on my file - should I go ahead and have surgery? or would it make sense to postpone? I thought optic neuritis would resolve itself.

I am not trying to diagnosis myself, just want to work from a position of knowledge when seeing the specialists.

Sorry this is long - probably hard for you to read also!

Thank you for your help, and good luck with your own health. Having a place to talk to others helps doesn't it?

Lesley
New Zealand

Hello Eyedoc, as with all new members at our site, I both welcome you and am sorry you had to find us in the first place. You are joining a community of friends who are approaching MS (oftentimes from a scientific perspective) with eternal hope that this condition will not be with us all that much longer. Thank you for saying hello (it does take courage) and for your generous offer to provide guidance to others where you can.

Leahma wrote:Hi EyeDoctor,
Would aprreciate your wisdom.

Mid December the vision in my right eye became blurred, peripherally, no eye pain but increased headaches. Feel like vision is grayed. Hard to see in bright light, and at night. When I get up at night I have a large black area with bright edges. Occassionally get pin point bright lights.

Saw eye spec - he could see partial vitreous detachment, but said it had been like that for a long time, scarring was evident. On further testing there was red/green colour vision lost.

I was referred to a retinal specialist who is excited as he can surgically fix the detachment! BUT I am worried it may be optic neuritis

In March I woke with stiff, sore legs and arms and extreme fatigue. Surgery is planned for 30 May, blurred vision, fatigue and sore body makes my work impossible.

I saw a rheumatologist who thinks (not his field of course) that vitreous detachment probably due to head injury some years ago. He put an urgent referral through to a neurologist. I will see him 25 May.

I don't want to get "hysterical" written on my file - should I go ahead and have surgery? or would it make sense to postpone? I thought optic neuritis would resolve itself.

I am not trying to diagnosis myself, just want to work from a position of knowledge when seeing the specialists.

Sorry this is long - probably hard for you to read also!

Thank you for your help, and good luck with your own health. Having a place to talk to others helps doesn't it?

Lesley
New Zealand

Hi Lesley...

I am a little confused by your case. Dp you mean there was a partial RETINAL detachment that is going to be repaired surgically? A VITREOUS detachment is something that we will all have later in life (50+ years of age generally) that is not repairable with surgery, but it can cause a partial retinal tear/detachment that is repairable. A retinal detachment can certainly have the symptoms you described, with the exception of color vision loss you described.

As far as the possibility of optic neuritis: The color vision deficiency in that eye would certainly point to a problem with the optic nerve. In many cases, we cannot see the inflammation that the nerve is having. We only see the very tip of the nerve that is in the eye. If you are having inflammation of the nerve behind the portion we can see, it is called retrobulbar optic neuritis, which is the most common form in adults. So, assumming the specialist could not "see" the inflammation of the nerve that goes along with optic neuritis, we have to go by symptoms to determine whether or not the nerve is inflamed. The color vision loss and hazy vision along with the fact that you have MS makes me very suspicious of optic neuritis. You are not being hysterical!

The two main things here to me are: 1. If you have a partial detachment of the retina it needs to be repaired. 2. See the neurologist and get his/her opinion on whether the symptoms you are having in your limbs and with your fatigue are likely due to MS. If so, he/she will likely order an MRI. They should take a good look at the optic nerve with the MRI and that will tell us if the nerve is inflamed, that is, that you have retrobulbar ON.

And yes, you are correct that ON tends to naturally resolve itself. However, if you are suffering vision loss, the standard treatment is an IV steroid to shorten the duration of visual impairment.

I apologize for such a long-winded post. There are many factors in your case, and as aforementioned, I am confused as to what you are having surgery for.

Hi ED

Thank you for your post! It is partial vitreous detachment (retina is OK-no tears/detachment) The specialist developed surgery for this, after working with diabetic retinopathy. Found out they could fix it, now want to, whether it is necessary or not! and tell me as a complication of surgery, I will need cataract op in 2-3 years!!!

When I had photo of the optic disc, the photographer noted the disc was swollen!

Thank you very much - you have given me enough to keep on questioning!

Have a good day
Lesley

Leahma wrote:Hi ED

Thank you for your post! It is partial vitreous detachment (retina is OK-no tears/detachment) The specialist developed surgery for this, after working with diabetic retinopathy. Found out they could fix it, now want to, whether it is necessary or not! and tell me as a complication of surgery, I will need cataract op in 2-3 years!!!

When I had photo of the optic disc, the photographer noted the disc was swollen!

Thank you very much - you have given me enough to keep on questioning!

Have a good day

Lesley

Hmm...

I am not quite sure why they would want to enter the posterior chamber of the eye to intervene in a vitreous detachment, unless they thought the detachment would definitely cause a retinal detachment or if it is causing severe visual impairment (unlikely). Generally, a vitreous detachment is fairly benigh with no little to no visual complications other than an increase in floaters (little specks in your vision). Anytime a surgery is performed in the back of the eye, the risk of cataract formation within a few year period is very high. Of course, if you develop a cataract, another surgeon gets to play with your eye!

I am not a retinal specialist, and I do not want to question one unduly, but I am a little leery of a surgery for a vitreous detachment.

Thank you, EyeDoc for the time and experience you have shown.

Tomorrow I do the pre-op routine, but am expecting to see the Retinal Specialist also. I will ask him out-right if I might have optic neuritis.

Neurologist next Thursday!

Quite possible they won't do the op as I am currently on oral prednisone (which has made no difference!! )

Hope life is settling for you!

Cheers Lesley

For those of you that sent me a private message after this thread was posted: I JUST checked them today I never thought to look at my PMs. I am very sorry, and I will respond to them asap and make sure I check them more regularly from now on

welcome to this wonerful group we have here...you will find that everyone will give you thoughts and everything to help you feel better....i love the site for the fact i come on here express my uneasiness and everyone is right there giving you the encouragement you need....welcome again to the group...

chris

Hey Eyedoc,

I reacted the same way you did, keeping my MS to myself for a long time. Actually, even at this point there are some people who really should know but don't yet. It's hard to know when you need to be open about it.

Your story reminds me of when I was searching for what could be causing my symptoms and, upon finding a description of MS in a book of mine, I pretty much diagnosed myself as having MS before any doctors hinted that that was what it might've been...

Anyways, I'm sure your expertise will be a great help to members here. Thank you for your generous offer, and welcome.

Craig

Hello there eye doc,

I too had ON as a first symptom. Quite scary I must say. I have since had ON in the other eye and I have some residual damage in both eyes because of it. I am trying to determine some way to deal with the headaches and dizzyness that comes with the vision defects. I am also HYPER sensitive to light, especially fluorescent lights. Do you have any suggestions for dealing with the effects of ON residual damage?

I had my 1st ON bout at 31 and my diagnosis came shortly thereafter in the same manner as yours did.


Anyway, this is a good site to discuss things with others with MS. I find that not too many others understand what we are going through. Keep your head up and take care.

Grumpster-

Unfortunately, optic nerve damage is permanent, but not all short term effects from ON are due to permanent damage. We see in patients with ON that the symptoms will gradually decrease over time and eventually subside. This is assumming of course that no new inflammation occurs.

As far as sensitivity to fluorescent lights...you may want to consider a pair of glasses for your work environment with a very light gray tint to help eliminate glare from the overhead lights.

Grumpster wrote:Hello there eye doc,

I too had ON as a first symptom. Quite scary I must say. I have since had ON in the other eye and I have some residual damage in both eyes because of it. I am trying to determine some way to deal with the headaches and dizzyness that comes with the vision defects. I am also HYPER sensitive to light, especially fluorescent lights. Do you have any suggestions for dealing with the effects of ON residual damage?

I had my 1st ON bout at 31 and my diagnosis came shortly thereafter in the same manner as yours did.


Anyway, this is a good site to discuss things with others with MS. I find that not too many others understand what we are going through. Keep your head up and take care.

Grumpster-

Hi there, EyeDoc,

Just wanted to thank you--and all ophthalmologists/optometrists who do the work that others neglect to do in diagnosing MS.

My daughter had seen other kinds of docs for more than 8 years for various and sundry symptoms I now believe were MS. At any rate, she developed double vision a year ago April and saw the optometrist at Walmart, who told her she needed to go to the Mayo Clinic immediately (we live about an hour from there) because she had a mass pressing on her optic nerve. We went straight to the ER at our local hospital; the wonderful doc there did a CT of Sarah's head and saw no mass either on imaging or by exam. She suggested we see an ophthalmologist and get an MRI scheduled.

Unfortunately, the next available appointment time with our local guys was about a month out, so I called in a favor. As a former medical transcriptionist I had worked for one of the clinic's eye guys, and when I put in a call directly to him he called back and worked her in at one of his satellite locations the next day. During the exam, he kept discussing "demyelinating processes," which was a hint to me, I think, but I couldn't even let my brain go there. He was so kind and thorough and gentle, and he ordered the MRI for the following morning. He then called me at home, practically in tears himself, and read me the results of the report. He treated us with respect and without any panic or misinformation.

He had never had to give that diagnosis to anyone before, and he was caring and informative.

Congratulations on declaring your disease and commencing your journey.

Thanks from a grateful ophthalmologist's patient,
OneCleverWoman