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Old 07-31-2012, 07:15 AM   #1
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Eye Pain and MS?

I have seen this type thread before and read all I can. I have been having varying degrees of eye pain for over 6 months. I saw a dr in Dec. when I thought my eyeball would burst from pressure. He tested and said pressure was fine. Since the beginning of July I have been to 2 other dr. Twice to the 2nd, and he tested and took pictures of my optic nerve, whole thing, can not find any reason for eye pain. I am also having numbness in my right hand and right leg/foot. I am doing a nerve conduction study on my hand tomorrow. The dr. is not one to jump to bad news, but from the eye dr and med dr they are definitely zooming in on MS, once the NCS is complete, dr will order a brain scan... any thoughts for someone in the beginning of testing? I have felt for months and months something is just not right... I have felt off-balance, which is not like me, and some other symptoms/issues, seems like a wierd combination of symptoms... I (until this started) am very healthy, do not take any meds, I excercise, don't drink or smoke... ???

Last edited by raden; 07-31-2012 at 07:21 AM.

 
Old 07-31-2012, 07:35 AM   #2
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Re: Eye Pain and MS?

Welcome.

I did not swear, drink, smoke, went to church every Sunday, ate organic foods, lived in the sticks away from the city pollutants.....and I got MS. MS is not a respecter of ethnicity, lifestyle, or social or economic status. IF you have MS, you have found the right site to come to ask questions and to be accepted as a person without blame. If you have MS, toss any blame or guilt out the window and into the dustbin.

Have you had a VEP? (Visual Evoked Potential). This can really help determine neurogenic components to your eye pain. When I had eye pain, I found that if I applied acupressure to the area perpendicular to my pain, I found relief. I also found that I have light sensitivity which contributes to my pain. Since 2002 I have been wearing polarized sunglasses both indoors and outdoors and this has reduced the pain and it has, in fact, been sometime since I last had eye pain.

If you have not yet read a copy of the Revised McDonald Criteria, I would encourage you to go online and print a copy. This is a set of guidelines that MS Specialists will (should) follow. You should be seen by an MS Specialist (a neurologist whose specialty is MS).

At this time you could be experiencing one of any number of potential concerns. If your doctors have eliminated the non-neurogenic possibilities, then the MS Specialist can guide you through the diagnostic process until something is definitely established.

The MS Diagnostic process can require the patience of Job. The diagnosis for MS involves eliminating every possible disease which you do not have. For most of these there are specific tests. IF all the possibilities have been eliminated, THEN you can be diagnosed with MS.

You have a long way to go, but you are not alone!
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Old 07-31-2012, 07:56 AM   #3
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Re: Eye Pain and MS?

I just looked up VEP and NO I have not done that test. Would that test be performed if the dr is going to order a brain scan? It seems the VEP test is very important if there are eye symptoms. I am not sure what the next step will be, I have my regular eye dr reports, and will do the NCS tomorrow and then will meet again with my medical dr to discuss the next step. I have heard this is a long road to figure out. I think it may be even longer for me paying out of pocket. I started a new job and do not have health insurance Thank you for you response.

Last edited by raden; 07-31-2012 at 08:15 AM.

 
Old 07-31-2012, 08:19 AM   #4
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Re: Eye Pain and MS?

Eye pain in MS can come from optic neuritis, an inflammation of the optic nerve, seen in the retina exam. Did your Dr. mention anything about that nerve? Another thing that can cause eye pain and pressure feeling, in the setting of normal eye pressures, is a sinus infection of the sphenoid sinus, which sits behind the eyeball. It can cause light sensitivity, pain on movement of the eye, and even broken blood vessels in eye. You might need a CT scan of sinuses to determine that unless you have other obvious signs of a sinus infection. Good luck with your testing.

 
Old 07-31-2012, 08:41 AM   #5
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Re: Eye Pain and MS?

ladybud, yes, the eye dr. did a picture of the optic nerve and showed it to me on the computer screen explaining the nerve looked perfect, no swelling/inflamation, checked the pressure-normal, did a field analysis, normal eye exam, looked into the back of the eye with the bright lights, I even ruled out dry eye by doing a regime of hot compresses and eyedrops... i have been told sinus can cause eye problems, but i present with no sinus problems, do not normally have sinus issues, and according to the eye dr. my eyes present normal, quiet and clear... and Thank you for your response... it just seems the testing could go in any directions at this point. So now I am on the hunt for information

Last edited by raden; 07-31-2012 at 08:52 AM.

 
Old 07-31-2012, 08:51 AM   #6
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Re: Eye Pain and MS?

You can seek grants/scholarships for some of your tests. I know the MSAA (Multiple Sclerosis Association of America) has funding for MRI's. The VEP is part of the testing you would go through.

You might also check with your state medicaid office for assistance. You might also look at your nearest teaching hospital in your state because they usually have an MS Specialist and they have the state connection regarding state aid available to curtail your costs.

I will add you to my prayers.
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Old 07-31-2012, 09:00 AM   #7
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Re: Eye Pain and MS?

Thank you so much for this information. I actually live about an hour north of Birmingham, the main (and probably largest) teaching hospital around. Thank you for your prayers... much appreciated!

 
Old 07-31-2012, 09:03 AM   #8
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Re: Eye Pain and MS?

I thought I recognized the your town name, but I was not sure. I would definitely make some inquiries to Birmingham. Stay out of the heat and try to remain calm through this whole process. If you have MS, it is not fatal and you can still have a career and a life.
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Old 07-31-2012, 09:30 AM   #9
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Re: Eye Pain and MS?

I have seen comments about the heat... those could be stated because we are having 100+ degrees for days and weeks, but really want to know if they exacerbate the symptoms? Then again 100+ can make everything seem worse I think my cognitive abilities are struggling, and balance seems impaired the hotter i get, but again that could just be because its so dang hot! What about medically? And as far as staying calm, I think for me knowledge is empowerment, gaining knowledge from people who have been there is so valuable to me, i don't rely solely on a dr but have my questions to ask, some knowledge about what is going on, other stories and some idea about things-test to come. That takes fear out for me so I am just beginning that process and am not going to self-diagnose. I really appreciate your knowledge and feedback.

 
Old 07-31-2012, 10:24 AM   #10
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Re: Eye Pain and MS?

When your nervous system is compromised through "frayed wires" (myelin sheath damage), your body's ability to regulate heat and/or cold temperatures can be affected, but this is not something that affects all MSers. If you can avoid the heat, lower your shower or bath temperatures, etc., you might find that these simple changes can help you regain some "normalcy". If you have MS, you will never regain "normal" BUT you can learn to accept a new "normal" that works for you.

There are meds which can work at alleviating symptoms, but there is no cure now or for the foreseeable future. If you learn to control your triggers (things that you do or experience which cause symptoms to present or worsen), then you can achieve a level of empowerment that helps you do better. For example, when the temps go above 82 F, depending on the heat index and the wind, I will start to hibernate indoors. My lower temperature range is more rigidly fixed than my upper limit. Yesterday I was driving at 7 PM and the temperature was 105 F (41 C). I had my AC blowing on me with every single vent. 5 minutes in that heat and I get wobbly and start to lose energy quickly. Thank goodness for disabled parking near the store entrances! Of course when it is that hot, even the healthy people and animals are in no mood to do much. My neighbor's cat and her 4 kittens have move over here to escape the heat (I have an earthberm home) and to be near the community water bucket. The cats were all laying in a pile and even the dogs were ignoring them. The cats were clearly in no mood to run away!

I think that if you keep a journal you might discover your own triggers whether temperature, life events, dietary, or other. You might try cold compresses at the site of pain.

You can certainly ask question on this site without fear and without prejudice. The site provides anonymity, but it also provides you with a large number of people who have experienced or who are experiencing the same problems you are. Empathy and personal experience can provide you with a wealth of knowledge and hopefully set your mind at ease. Sit back and read a nice Lewis Gizzard book or enjoy some old Jerry Clower recordings- I still do this when I need to relax. Medicine? Laughter is still highly rated in my book . There is much to enjoy in life, you need not let any of this get you down!

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Old 08-01-2012, 10:13 AM   #11
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Re: Eye Pain and MS?

So I had my nerve conduction study on my right hand today... the neuro-science tech could find nothing wrong. he tested all major nerves, peripheral nerves and those which could be affected by carpal tunnel. But to go on a rant... I have had the same several symptoms for a long time... eye pain (after 3 dr visits -no known or evident etiology), now the NCS ruled out trauma or CTS... I waited to see a dr about these symptoms because I heard, well you are just getting older, things hurt. I am only 32- hello! This type of numbness, weakness, pain, without provocation does not sound normal. I have read where lots of times dr will make you feel like its in your head, I am fortunate to have a dr who has told me his concerns or looking at MS, the eye dr, the NCS neuro guy have all been super nice and good... its other people... and I have only told maybe 7 people. They may not mean anything by those comments but when you are the one hurting and having very strange symptoms I really don't want to hear... oh your just getting older, everyone hurts... yadda yadda. Its not that I want a dr, any dr to "find" something but I also know how my body feels and I have thought for a long time something is "off" and just not right. I feel like my head if full of water sometimes, off-balance, lose words, and while a "slip of the tongue" or "Freudian Slip" may occur naturally those are usually not noticed in pattern or such close proximity to another that you question those, which is occurring with me. I can feel frustration... but will wait until I have a brain scan to see if any results can be found there... until then... wait patiently... and don't listen to others! Ha!

 
Old 08-01-2012, 10:24 AM   #12
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Re: Eye Pain and MS?

In your journey to get a diagnosis, you will meet misinformed doctors, prejudice, bias, and "angels". Hang on to the "angels" because they are a blessing. Even if you get a diagnosis of MS, you should know that you will continue to meet rude people, well-intentioned people, misinformed doctors....it is a lifetime battle.

Nerve conduction studies, I think, are not as accurate as the VEP, but this is my personal experience. Had my MS Specialist depended on a nerve conduction, I would have passed. The VEP has always worked for me. In 1982 my MS Specialist used a needle/pin to poke areas as well as the Babinski reflex.....times have changed.

You will have better days ahead. You will have to advocate for yourself. Hold doctors accountable. Stand strong!
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Eternally blessed and eternally optimistic!<><

 
Old 08-01-2012, 10:52 AM   #13
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Re: Eye Pain and MS?

The NCS was to rule out carpal tunnel syndrome and make sure there wasn't a "local" issue that could result in the numbness, weakness. Same thing with going to the opthomologist 3 times... rule out what you can before the brain scan. I am thankful after looking on these boards that my dr seems to be taking my symptoms serious, my dr knows I do not like medicine, and only come to him when its bad. he wanted to rule out carpal tunnel or anything that could cause the eye pain before ordering the brain scan, now that he has those reults, he will order that. From what I can tell, the scan needs to be an MRI with and without contrast done by a neurologist that specializes in MS (since that is what the symptoms are pointing toward thus far?). Any tips would be greatly appreciated. And I agree that all types of people exist (I work with the public), I am just frustrated right now because these people were not just "the public" but friends or family busting my chops for mentioning (complaining or enquiring) about symptoms. I am thankful for these board already because I haven't seen anything but encouragement and concern that if something is wrong, it gets properly diagnosed and the best care possible- SO THANK YOU!

 
Old 08-01-2012, 11:09 AM   #14
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Re: Eye Pain and MS?

Once you get an MRI (make sure it is with and without contrast) entrust it to an MS Specialist or a neurologist who has experience with MSers. Once you are seeing an MS Specialist, they will run you through a battery of tests. Go online and print a copy of the Revised McDonald Criteria which will help you to "follow along".

Friends and family can be the best or the worst. I know that I had many fair weather friends who scattered like the wind when I was diagnosed. I also had family members who tried to blame me for this disease and family members who tried- with the best intention- to buy a supplement which was a "cure". My mother spent her life never giving up and always reading about the latest and greatest elixir. I finally had to tell her that her intentions, while they were good, only enriched the hucksters who would be promoting another elixir in 2-3 months.

I think that if you have MS or ??, you will discover true friends who stand by you and new friends who share your burden. It is part of the walk with MS. For some friends you have to allow them to grieve. Once they see that you are still the same person, they will not grieve and they will return. For others it is an educational process because for many their first experience with a chronic disease will be your chronic disease. Consider yourself a pioneer in your area. Later you may find newbies who will seek your counsel and older sufferers who kept their disease hidden out of fear and rejection.

I would encourage you to be a beacon in your "neck of the woods". In the meanwhile, you have my support and the support of others here.
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Old 08-01-2012, 11:23 AM   #15
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Re: Eye Pain and MS?

That was so sweet and encouraging... it made me tear up! Thank you and I will post an update when I hear from my Dr. (and I have to say- I love the "yee-haw" mood). That saying gets used alot down here

 
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