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Vision problems in both eyes?


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Old 03-01-2006, 05:50 PM   #1
Life4Fun
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Question Vision problems in both eyes?

I was dx with MS 2.5 years ago. At that time I had just moved back to the US after a year working in a very stressful situation in India. I fully believe that the stress and heat there brought on the symptoms that led me to the point that I needed to be hospitalized. I had numbness on the right side from the waist down. This was not the first time this had happened, but it was more than 15 years prior to this that I had experienced that symptom. After the dx and the follow up visits to two neurologists, I began to piece together other episodes that were MS-related. The emergency room doctor that saw me when I experienced the numbness picked up on it immediately. He told me after doing some tests in the ER, "I think you have MS. You need to see a neurologist." I was stunned. The neuro had an MRI done and they saw small lesions, but needed to see another episode before they would do an LP. That was fine with me. What I didn't realize was that the vision problem I had about 10 years prior was likely optic neuritis, so I never thought to mention it.

Anyway, two weeks ago I woke up with vision problems in both eyes. It feels like someone took a photo of me in the dark with a flash and that my eyes never returned to normal vision after that. What is odd is that it is in both eyes. The left eye seems to be more affected than the left, but they are both not good. It is most noticable when I am reading. Letters or parts of letters seem to disappear, especially with writing on a white background. When the writing is light on a dark background, it is easier to read, but it is not what it should be. I try to see if I can get better vision with my reading glasses or bifocals or single vision glasses, but they are all the same. If I am online and punch up the font to a very large size -- 32 or more, it is much easier to read, but still not what it should be.

I live and work in Buenos Aires right now and the summer has been very hot (we are well below the equator, so it is summer now, although fall is coming soon -- as your Spring begins). I have noticed some episodes of numbing in the left-hand fingertips, but it is usually short-lived. I feel very tired at the end of the day when I've been out in the heat, but I can deal with these things. My neck hurts on and off -- I have a couple of lesions in the C-spine which are pushing on the discs. It also seems to give me a headache from time to time, but Advil clears that right up.

The sight problem is very distressing though. I came home on a long overdue home leave so that I could chill out -- literally and figuratively! And I wanted to get with my doctors. I had an MRI today, but don't see the neurologist until Monday. So I am trying very hard not to play Dr. Fran and self-diagnose with the films I have sitting here on the table, but it is very difficult. I pulled out a couple of the films and see leisions, but I am not sure which are new ones. The last time I had an MRI I pulled them all out and studied them and when I went to see the doc, I think he was a little miffed that I had looked at them and put them back in the envelope all out of order. I guess I am not a good enough doctor to play a part on ER or Gray's Anatomy and it's time to resign my position as Dr. of my self, but curiosity gets the better of me. I know I am just 30 minutes away from pulling out the films from today and the last 2 MRI sessions to see if I can compare them all and determine if there is a new leision that is affecting the visual cortex.

I saw my opthamologist on Monday morning and she was apologetic that she didn't come up with anything during her exam that she could "fix" for me, but she did say that she believes what I am telling her about the vision loss and that if it's MS related, it is most likely a leision located in the visual cortex. My research online shows me where that is located in the brain, so that is what I want to look for on the MRI, but I know it would be better to just wait.

I am sorry for this long babbling post, but the long and the short of this is these questions --

1. Has anyone had this type of symptom? Like you've been looking into a light or the sun or a flash bulb and you still can't see properly?
2. Has anyone had a episode in which your vision was affected in both eyes at the same time?

Thank you for bearing through this hypnotically long, tiring post, but I am a very impatient person that needs answers sooner rather than later, and the later is Monday.

Fran

 
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Old 03-01-2006, 10:38 PM   #2
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Re: Vision problems in both eyes?

Do not let the doctors scare you off from being INVOLVED in your own care! There are no dumb questions - you are doing the right thing by researching and educating yourself in your own body and symptoms. Always ask for copies of your medical reports and ask detailed questions for anything your don't understand. Do not let the doctors intimidate you - Just remember how much they are getting paid to provide you with service.

In regards to your question. I have pain in both of my eyes, but I do not have ON. I have however had up to 50% blurriness of vision in one eye at times (such as right now, i am typing with one eye closed because i have lost my vision in my R eye).

Because I do not have ON, it can only be attributed to my lesions (2 total) being located in the R occipital lobe.

Every case of MS is different (so I am learning). I think after studying the MS healthboard, I have heard of at least every body part being affected in some way or another. Many people I can relate to, and others I have related to on some level but not at the same consistency or intensity.

I do not have an "official" dx from a neurologist, but it is my GP who believes that I do have MS. If it was not for my GP, I would have no clue as to what happened to me about 6 months ago when I had a full-blown attack out of the blue.

What is really funny is when you start reading these posts, how many people have typos in their posts - that is because we are all suffering from the loss of vision or loss of words. I don't really think we are all that bad of spellers.

Just now, I had to go back and correct my post twice, just to make sure that I did not mess up my typing!

LOL

 
Old 03-02-2006, 07:32 AM   #3
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Re: Vision problems in both eyes?

Hi Lestoby,

Thanks for the encouraging, detailed reply to my post. It's funny you should metion the typos or misspellings. I have been an incredibly fast typist since high school. Typing and spelling have been my biggest talents in life. Well, maybe not really my biggest talents, but perhaps the easiest skills I have dealt with all my life. I am a stickler for spelling and have been able to type and talk to people at the same time, never having to look at the keyboard directly. It has always drawn comments from people that have seen me do it for the first time. Anyway, what I've noticed since the onset of this problem is that I am making very frequent mistakes. Usually my brain somehow knows when I've mistyped something and automatically sends a signal to my pinkie to hit the backspace key to run back to automatically make the correction, but in the past 2 weeks, it's not happening as frequently. I did not really blame it on the vision problem, but someone I work with noticed it too, so I began to think that somehow it's related. Since I touch-type, I figured it had nothing to do with my vision, but perhaps it's all related -- maybe my brain is not only giving bad signals to my eyes, but to my fingers as well, although they don't feel different or anything.

I will probably pull out the packets of MRI films and begin looking to see what I can figure out. The light is not great today with the weather we are having, but I just need to see what I can figure out.

What you say is interesting about the reading of the posts on these boards. I just joined last night and had to tear myself away to go to bed. And let me tell you, it wasn't easy spending hours reading.

I hope you get a diagnosis, because then they can start doing something about it. When I had the episode that landed me in the hospital, the IV steroids seemed to start clearning up the symptoms within 24 hours and by the next visit with the neuro, he was very pleased, as was I, with the quick progress.

 
Old 03-04-2006, 12:53 PM   #4
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Re: Vision problems in both eyes?

So now I have a new question. I've been spending a lot of time on the boards this week. I saw my GP yesterday. I've been treated for high blood pressure for the past 2.5 years. It was well under control with the medication she prescribed. I had noticed that I was becoming very cranky and snippy at work before I came up here for my home leave. Even people at work were telling me it was time for me to take the long overdue break. I was anxous to get out of the extreme heat of the southern hemisphere. The city (Buenos Aires) has been terribly hot for the past 3 months or so. We didn't have a break in the 90+ weather until the day I left when it broke and fell into the 70's. It looks like it's climbing again -- just in time for my return from Home Leave. Oh well.

So as I mentioned the other day, my eyesight has been causing me problems for 3 weeks now and I thought it was the MS, but it was odd that it appears to be affecting both eyes. The left a bit more than the right, but both eyes nonetheless.

I took my BP Wednesday evening and was horrified to see it up at 160/100. It had not been that high since the hypertension diagnosis and having it in control with the proper medication so I was not expecting this at all. I had been having headaches, but didn't put two and two together. I contined to monitor it until my GP appointment and it was not budging. Not only is my BP sky high, but my cholesterol is out of control too. Too much red meat and millanesas in Argentina. I am going tohave to find a way to get around that if I am going to live there for another year. Better work on my Spanish so that I can make my reqeusts clear when I order lunch or dinner going forward, that's for sure. There is no way I will get around the extreme amounts of salt that are used down there though. That is just part of the food culture in Argentina.

When I got to the doctor's office yesterday afternoon I was apparently a victim of "White Coat Syndrome," because it was up to 155/110. I'd been worried about it for 3 days and knew it would be higher when they took it, adn I think they realized the same thing.

So the doc put me on a different, stronger hypertension medication. I took it a few hours before heading to bed. I was desperate to read a good book, so I thought I'd try and low and behold, I could see much better! I took my BP and just 4 hours after having the last measurement of 158/99 it plunged to 128/78!!!! WOW! I was thrilled and confused as to why the opthamologist didn't pick up on it on Monday. I woke up this morning and it was still down -- 128/84. Well within normal range. My vision was still good, not perfect, but so much better than it had been.

An hour later it was back to what it had been for 3 weeks though and is still not great. I did take the MRI films out that I had done on Wednesday and still am not a doctor and can't tell if they are active lesions or new lesions and can't tell if all the white areas are lesions or are white bedcause they are supposed to be, but do see three round white spots in a vertical line near the center of my brain that are certainly lesions, I just don't know if they are old ones or new, active ones.

I have my neuro appointment on Monday morning, so I am very anxious to get in there and see what is going on. I am worried because some snow is predicted. If it turns out to be more than a rain/snow mix, my appointment might be canceled and I will be very unhappy. I've been anxiously awaiting this appointment for weeks. Ugh! Something else to worry about. My BP is sure to be ugly when I walk into his office unless this new medicine is the current "cure" for me.

I've had to put my return to Argentina on hold because the GP needs to see me again in 2 weeks and she was not comfortable with me going back without having time for this medicine to have some time to settle in and to do the necessary follow up blood work. I am going to have to bite the bullet and find a good GP and neurologist when I return. I can't continue to go for a whole year without being checked. That has been made very clear. A real eye opener with these recent issues.

If it's not one thing, it's another.

 
Old 03-04-2006, 02:28 PM   #5
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Re: Vision problems in both eyes?

"What is really funny is when you start reading these posts, how many people have typos in their posts - that is because we are all suffering from the loss of vision or loss of words. I don't really think we are all that bad of spellers.

Just now, I had to go back and correct my post twice, just to make sure that I did not mess up my typing!"

Great. Now is it worse to type the toyos or not to even notice them? And I'm the type that could find a mispelling in any publication I picked up.


Sorry, I have no real advice for you, I have no diagnosis other than peripheral neuropathy. (and that I'm a touch typer that used to somehow "know" when I had made a typo and be able to fix it still without looking...so I know how frustrating it is.)

Last edited by curiousforever; 03-04-2006 at 02:29 PM.

 
Old 03-04-2006, 03:57 PM   #6
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Re: Vision problems in both eyes?

Life4Fun,

Keep us posted on the results of your neuro appt.

When you rec'd your dx 2.5 yrs ago, did they offer you any of the CRAB drugs? If yes, why did you decline to take the meds.

I have not been dx'd yet, but I have a feeling I probably would decline meds due to the ridiculous costs, side effects, fear of injecting myself, and the fact that they are not a cure.

But, if my sx. progress, than I most likely will reconsider. My current sx. persist, but have not progressed to the point that they were when I had my attack in August.

I too am a touch typer and have type 85wpm, but something in my cognitive skills is lacking - not what it used to be. If I type a letter and have my mom review it (she is a nitpick for spelling and grammar) she will point out my mistakes. I go back and review the letter and I think, what an idiot... how could I have missed that.

I also am responsible for handling the finances of our personal business and I can't believe how many times I transpose figures when paying the bills or crediting rents for tenants. I feel so stupid and of course, I don't catch the mistakes immediately, it is always much later when trying to balance my checkbook or when a tenant points out the error.

They must think I don't know what the heck I am doing.

 
Old 03-05-2006, 07:46 PM   #7
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Re: Vision problems in both eyes?

Hi Lestoby,

I didn't decline to take the drugs. My neurologist was ver persistent in pushing Copaxone. I got the prescription right away and took it religiously for a year and a half. I relocated to Buenos Aires and took a month's supply with me and when it ran out I ordered a box from a local pharmacy. The drug was two times as much in the US and I was on a new international health insurance plan that the company I work for provides it's expatriates. The out of pocket deductible is quite high on this plan and the drug reimbursement is only 80%. So, in the US it would only cost me $40 of the $1500, but in B.A. it was costing me $600 of the $3500!! It is not that I can't pay for it, but it's the principle of the thing. I called Cigna and asked if they would ship it. The materials they sent me when I got on their plan said that they do ship to all countries if needed. But that was the catch. if needed . Since it is available in Argentina, they did not feel the responsiblity to ship it to me. I said, but it would save the company money if you shipped it to me because the reimbursement is still much more than the cost when I was living in the US. But I lost that battle. So about 7 months ago I stopped taking the Copaxone.

What a mistake! My doctor said that some of the lesions I had on previous MRI's had gone away and others had decreased in size nicely. So, I am kicking myself for being so obstinate. How did I justify buying another unneeded leather jacket or purse or expensive shipment of books from Amazon when I could just as easily have purchased the Copaxone.

Needless to say, I will be going to the pharmacy with a new prescription tomorrow and getting back on track. I brought my autoject with me so that I could get back on and taking care of myself.

My experience with Copaxone has bee very good and I have no hesitance in getting back on. The only side effects I have experienced with it is injection site lumpiness and ocassional bruising. For a while I thought, "How can I get into a bathing suit." But please! I rarely ever do that and people are not going to be looking at the red spots or bruises on my legs or the back of my arms! There are plenty of other things for them to criticize, that's for sure. And who cares aobut what you look like as long as you're feeling great, right?

This has been a very tough lesson learned. I still think the vision problem is probably blood pressure related since it's affecting me bilaterally, but I guess tomorrow's neuro visit will help confirm that.

Oh, another thing -- my doctor insisted on getting on Copaxone immediately when he diagnosed me, because they say that the sooner you get on it, the more help it will do in slowing the reoccurance of relapses. I think he was right. I was fine until I went off the Copaxone. I started noticing numbness in my lefthand fingertips very soon after I went off when it got hot in the city.

So, there you have my long reply to your note. I don't want to tell anyone what they should do, but did want to report my experiences. Hope it helps.

Fran

 
Old 03-05-2006, 10:23 PM   #8
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Re: Vision problems in both eyes?

Quote:
Originally Posted by Life4Fun

This has been a very tough lesson learned. I still think the vision problem is probably blood pressure related since it's affecting me bilaterally, but I guess tomorrow's neuro visit will help confirm that.
To Life4Fun

Yes, thank you for your insight - I will certainly keep it in mind if and when I ever get a dx.

Regarding your BP, I just want to tell you about my experience. The night I had an attack, my BP went 193/90. I am normally 128/60 or lower BP. When I was in the ER, I was freaking out every time the read my BP level. They just kept saying "Pain will do that to you". However, my BP was still high 7 days after my attack. They prescribed high blood pressure medicine along with an antibiotic for me and it still did not lower my BP.

After 2 weeks I quit taking all the meds they gave me and my BP went down and remains normal today.

So, maybe your high BP is related to a possible relapse or pain.

Just a thought......


 
Old 03-06-2006, 05:43 PM   #9
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Re: Vision problems in both eyes?

Hello Everyone!

Well, I had my neuro visit today and I have officially reinstated myself as a doctor. My mom is going to start telling all of her friends about "her daughter the doctor."

I was right on target with what I thought was happening with my body. I have enhancing lesions in my brain and one of those is flaring quite a bit and it ins the pathway to the visual cortex. The doc said something that I didn't catch and didn't click until I was in the car driving home that he explained as the reason both eyes are experiencing a decline in vision. The left eye is a bit worse than the right and since the lesion is off the cerebral cortes on the right side just a bit, that is why it's affecting the left eye more.

So the next step is Solumedrol for 5 days. I can do this at home. It's 24 hours a day with little sleep since the routine means taking the bag out of the fridge and getting it to room temp about 30 - 45 minutes prior to the infusion and then an hour on the pump. Just about the time you fall asleep again it's time to start the cycle again. So it's a pretty exhausting time, but it helped me so much the first time, that I am being very optimistic that it will do the same this time.

My work is being very supportive. I told them that I can't go back to Argentina for 3 weeks. I know that I felt pretty cruddy for a few days after I came off the Solumedrol last time and won't be up to an 11 hour flight back down to the heat for 2 weeks. It was not a problem at all. What I DON'T want is for them to pull me from this assignment out of compassion. They have the ability to think that it's better for me to be in the US, when in reality, it's more stressful to be working out of the headquarters facility, so I am quite happy to head back to my life in Buenos Aires when I am all done and have had a couple of weeks to get back into fighting form.

Now ... what I have to deal with are the bruises I am giving myself for kicking myself in the butt for going off the Copaxone out of obstinance! I hav learned a very difficult lesson and the doctor confirmed that without my saying so. He said, "It's quite a costly price to pay." He said that had I waited 2 more weeks to be seen, it could have been a big problem. I suppose the active lesions could have made the poor eyesight a permanent fixture in my life, so it was a real blessing I got up here and had the MRI done and had the appointment to see him this morning. He was just receiving the report when I walked into the office. Whew!

He also sent me home with THREE boxes of Copaxone. A patient did not like it and returned the 3 boxes. So that was a really great thing for me! I will deal with the issue of getting the meds going forward and now just have to figure out how to pack them in my carry ons to get back.

Thanks for listening all!
Fran

 
Old 03-08-2006, 06:24 PM   #10
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Re: Vision problems in both eyes?

I started my IV Solumedrol this afternoon and was very excited to learn that the process has been greatly improved in the past 2.5 years. I the past, I had to run the pump ever 4 hours which meant being up and preparing and pumping and having just over 2 hours to rest for the next session around the clock for 5 days. It was exhausting and uncomfortable having to do it like that. This time it's just one 60 minute session each day for 5 days! Even if the catheter slips, which is likely to happen, I won't mind. The nurse will come back and set me up again and it will be done for the day again.

My biggest problem so far has been the horrendous taste I have in my mouth. It seems like cold foods and drinks are worse than hot. I bought some fresh fruit pops hoping that would help, but it tasted pretty bad. I had a Diet Sprite with dinner that tasted like I drank chilled molten steel or something. I can handle it for 5 days though if this is the only side effect. The other thing is that this is a megadose in one sitting rather than over the course of 24 hours. 1 gram -- or 1,000mg in 60 minutes. I guess that's why the taste has happened. I hope I don't get nauseaus or anything. The doc gave me a strong prescription medicine to prevent ulcers. He didn't give me that last time either.

To top everything off that's been happening since i came home for my home leave last week and discovered high blood pressure and high cholesterol and an MS relapse this happened --- as we were finishing the drip this afternoon, my internist's office called to tell me that during the lab work they did on Friday, they found ecoli and another parasite in my urine! I said, "Are you kidding me? I feel fine." The nurse said -- "You are living in Argentina and are surprised that you have parasites living in you?" hahahahah! It was almost comical. She is right. I don't drink water from the tap, but do brush my teeth with it and take my meds with a quick splash and clean my fruits and veggies in it. It's rally irionic -- I lived in the Philippines for 2.5 years and India for a year prior to this relo to Argentina and never had ecoli or whatever the other parasite is. I guess I was just too laxe in my thinking that things were farther along in Buenos Aires. All the reading I did about it said that the water is potable, but that it registers high lead levels so I never expected this. Add another medication to my repitoire -- an antibiotic. My body must be thinking -- what in the world is this crazy expat doing to me! Stop the madness!!

Is anyone out there experienced with the bad taste issue with the Solumedrol therapy? If so, do you have any suggestions about how to handle it?

Thanks!
Frannie

 
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