str8tekno
03-04-2008, 12:53 PM
i have ON in both eyes. the 1st eye had no treatment, and 2nd eye had steroid treatment. both were about 4 mths away from each other. recently diagnosed with MS due to this. the 1st eye w/out the treatment has blind spots in it, but not totally blind (that is my reliable eye now). the other eye has very dim vision. this causes me to be off balance due to the difference in contrast of each. my question is this...are there any special kinds of sunglasses that may help with situations as follows>>
brightness of lights in a store (i feel blind and cannot see what i am looking for unless i am on top of something, and even with tinted glasses, it still doesn't do much, driving is a chore also, and do it very little. even typing on my pc is hard on the eyes, and i still have not been back to work yet. my eyes are not bad otherwise, so i do not wear prescription glasses. it is just the discomfort of going to places and driving due to the differences of lighting. i did hear that yellow (amber) colored glasses can help with night time driving and enhance things, but i do not know if i want to try that. when driving, i want to see the contrast turned up in other vehicles, and people crossing the street in front of me. if i can get past that part, then i know i am good to go. i hate riding with people, because i get car sick with anxiety. please help with any advice! i am desparate. thanks! al
brightness of lights in a store (i feel blind and cannot see what i am looking for unless i am on top of something, and even with tinted glasses, it still doesn't do much, driving is a chore also, and do it very little. even typing on my pc is hard on the eyes, and i still have not been back to work yet. my eyes are not bad otherwise, so i do not wear prescription glasses. it is just the discomfort of going to places and driving due to the differences of lighting. i did hear that yellow (amber) colored glasses can help with night time driving and enhance things, but i do not know if i want to try that. when driving, i want to see the contrast turned up in other vehicles, and people crossing the street in front of me. if i can get past that part, then i know i am good to go. i hate riding with people, because i get car sick with anxiety. please help with any advice! i am desparate. thanks! al
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MSNik
03-04-2008, 01:13 PM
Hi Really cant help you with the advice on colored glasses...but I definately think you need to see an opthamologist!
Having had ON three times, my once perfect eye sight is now a disaster. I wear glasses and the prescription has changed 3 times- I wear contacts, when I can stand them...my eyes are much more sensitive then they ever were.
Just because you didnt wear glasses before, doesnt mean that having them now wont cure the difficulty you are describing..most of what you are describing can be fixed with a prescription. Also the eye doctor can tell you more about helpful hints on colors and tints..
Please see a good opthamologist and not a chain store eye doctor. You need a good exam!
Good luck.
Having had ON three times, my once perfect eye sight is now a disaster. I wear glasses and the prescription has changed 3 times- I wear contacts, when I can stand them...my eyes are much more sensitive then they ever were.
Just because you didnt wear glasses before, doesnt mean that having them now wont cure the difficulty you are describing..most of what you are describing can be fixed with a prescription. Also the eye doctor can tell you more about helpful hints on colors and tints..
Please see a good opthamologist and not a chain store eye doctor. You need a good exam!
Good luck.
str8tekno
03-10-2008, 02:16 PM
first of all, MSNik, thanks for your response...
it's unfortunate, but i still have not gotten much better. my neurologist put me on 'roids a couple of mths ago, and about a mth ago i had been towho my opthalhmologist who told me to give it 6 mths (like she seems pretty positive that things will improve) after my eye exams. i'm driving myself bonkers sitting around at home...my trusted dr's cannot do anything more...it is all on what my optic nerves wanna do. i can only do so much, and has anybody heard of the "uhthoff's phenomenon"? this happens to me alot, and i'm not sure if anybody else is the same...especially getting out of the shower. who wants to take a shower that is cold all of the time, just to prevent this strange phenomenon from occuring? trying to clean my home...i have to stop and rest after every little project, because my body overheats too much, and easily (besides the stress of what is already going on...which does not help). i am going to attempt to drive today again. i have been trying at least once a week to see if things have changed at all. wishful thinking, but i am determined to get back out there and enjoy life again. i have been depressed, because this is ruining my life, and i am getting married in 8 mths, so this is really stressful trying to plan.
it's unfortunate, but i still have not gotten much better. my neurologist put me on 'roids a couple of mths ago, and about a mth ago i had been towho my opthalhmologist who told me to give it 6 mths (like she seems pretty positive that things will improve) after my eye exams. i'm driving myself bonkers sitting around at home...my trusted dr's cannot do anything more...it is all on what my optic nerves wanna do. i can only do so much, and has anybody heard of the "uhthoff's phenomenon"? this happens to me alot, and i'm not sure if anybody else is the same...especially getting out of the shower. who wants to take a shower that is cold all of the time, just to prevent this strange phenomenon from occuring? trying to clean my home...i have to stop and rest after every little project, because my body overheats too much, and easily (besides the stress of what is already going on...which does not help). i am going to attempt to drive today again. i have been trying at least once a week to see if things have changed at all. wishful thinking, but i am determined to get back out there and enjoy life again. i have been depressed, because this is ruining my life, and i am getting married in 8 mths, so this is really stressful trying to plan.
MSNik
03-10-2008, 06:20 PM
Hi again. First of all, you should know that probably every single person here has Ulthoffs and doesnt know what it is....basically, it is heat sensitity and all MS patients have it....when we take hot showers, baths, or stay out in the sun or heat too long, it totally aggravates our symtoms. I have had this for almost 4 years but didnt know what it was until I was dx with MS 1.5 years ago. I used to get out of a hot shower and cry..I was disoriented, dizzy, and I couldnt see. (ON). My first true bout of ON, which was pretty bad led me to a Opthamologist who STILL didnt dx MS....however, the next month, when I woke up with pins and needles in my hand- that led me to my GP (thinking Carpal Tunnel) which led me to a CT scan (he thought pinched nerve) and Evoked Potentials (for the possiblity of carpal tunnel) and that led to an MRI, a Neuro, an MS Specialist and a diagnosis! (of MS)
2 questions for you. You mentioned you did steroids...what kind? Dose pack? IV? If you havent been on an IV of Solumedrol, you NEED to be before any more damage, or any permanent damage is done..
Second question is you are in PA...anywhere near Philly? U of Penn has the best Neuro and Neuro=opthamologists in the state....I live 45 mins from phlly and bounce between Robert Wood Johnson's MS clinic and U of Penn's for my eyes....
Your doctors can and should be treating this more aggresively.
I hope you feel better soon.
Nikki
2 questions for you. You mentioned you did steroids...what kind? Dose pack? IV? If you havent been on an IV of Solumedrol, you NEED to be before any more damage, or any permanent damage is done..
Second question is you are in PA...anywhere near Philly? U of Penn has the best Neuro and Neuro=opthamologists in the state....I live 45 mins from phlly and bounce between Robert Wood Johnson's MS clinic and U of Penn's for my eyes....
Your doctors can and should be treating this more aggresively.
I hope you feel better soon.
Nikki
Bearygood
03-10-2008, 09:20 PM
Re: heat sensitivity, it is not true that everyone has it or at least experiences it the same way. I am not any more sensitive to the heat than I ever was and I know that many others do not experience that as well. That said, I DO get Uhthoff's in the eye I had ON in -- it's kind of like a pressurized feeling and I can get a little blurry. str8tekno, I don't have any advice to you re: glasses to help but I agree with Nikki that you should go see an ophthalmologist or better yet, a neuro-ophthalmologist. Also regarding your eye, recovery from ON takes patience -- it took me 9 months to get vision back and according to my last orbital MRI, I am STILL recovering!
str8tekno
03-13-2008, 04:41 PM
hello, i would have responded sooner, but i cannot be on my pc too long due to this ON.
answering your 1st question, i was put on prednisone steroids (IV and pills to taper off of the dosage). answer to the 2nd one, i am a couple of hours north of Philly.
do you try to drive? i tried again today, and i scared myself w/ anxiey...i had to pull over for a minute. the hot sun was glaring through my driver window, and made my sight go dim while wearing sunglasses. i put my windows down (it's only 50 outside), but it felt good just to try to cool down, besides driinking water. i have to master the anxiety, because it would not be as bad. i thought about going on meds for it. it is getting rediculous.
answering your 1st question, i was put on prednisone steroids (IV and pills to taper off of the dosage). answer to the 2nd one, i am a couple of hours north of Philly.
do you try to drive? i tried again today, and i scared myself w/ anxiey...i had to pull over for a minute. the hot sun was glaring through my driver window, and made my sight go dim while wearing sunglasses. i put my windows down (it's only 50 outside), but it felt good just to try to cool down, besides driinking water. i have to master the anxiety, because it would not be as bad. i thought about going on meds for it. it is getting rediculous.
MSNik
03-13-2008, 08:15 PM
Hi there. Im soo sorry you are still having problems...you answered my questions by stating that : you were on IV and then taper pack, right? Im really surprised that this hasnt gotten better for you...have you seen a good opthamologist in the past month? You should really have them follow up- your case sounds unblievably bad.
and you said you are a couple hours north of Philly, I can only imagine that is either past Harrisburg, or towards State college, cuz anything the other way will take you to NJ, where I live! It might be worth checking out U of Penn, if you can get someone to drive you....I would, if I were you. They have a world class MS center, including Neuro-Opthamologists...
And, you asked if I drive.. for a living! I actually drive anywhere from 50-400 miles a day as an outside sales rep. Im in the medical field and cover 9 counties in NJ calling on doctors, nurses, hosptials, administrators, the works. So, yes, I drive....there have only been 2 weeks in the past 1.5 years that I havent been able to drive, and both of those times I had ON; however both of those times it cleared up with the steroids (IV). ..
I feel so bad for you ...please let me know if you are getting better.
Nikki
and you said you are a couple hours north of Philly, I can only imagine that is either past Harrisburg, or towards State college, cuz anything the other way will take you to NJ, where I live! It might be worth checking out U of Penn, if you can get someone to drive you....I would, if I were you. They have a world class MS center, including Neuro-Opthamologists...
And, you asked if I drive.. for a living! I actually drive anywhere from 50-400 miles a day as an outside sales rep. Im in the medical field and cover 9 counties in NJ calling on doctors, nurses, hosptials, administrators, the works. So, yes, I drive....there have only been 2 weeks in the past 1.5 years that I havent been able to drive, and both of those times I had ON; however both of those times it cleared up with the steroids (IV). ..
I feel so bad for you ...please let me know if you are getting better.
Nikki
str8tekno
03-14-2008, 01:04 PM
i'm sure there are people out there that are in worse shape than me, but i want to get back into the groove of things again. i miss working (believe it or not), and driving. things more or less are trying to get better slightly, but i don't know if i am imagining it or not. i have my good days and bad days. i am trying not to turn into a vegetable by sitting around moping. i wish there was a cure for this...they have cures for a lot of other things out there. i had great eyes before this happened, so it is very hard to understand that fact that it is happening. my dr's are all dr's that have been in the field for many, many years, and not one bad word has been heard about them. that is why i chose to go to them...the best in this area. if they say it will take time, and will come back, i beleive them, but i will rub it in their faces if nothing goes as said. i live about 40 mins. north of hbg.
yes, and i forgot to mention earlier, i was on 'roids, and the taper off pack.
yes, and i forgot to mention earlier, i was on 'roids, and the taper off pack.
taosdaphne
03-14-2008, 07:16 PM
Yes, Philly has had a good (and deserved) rep for eye care for decades--my brothers both had their crossed eyes fixed at a hospital there that I think has merged with someone else--Jefferson, maybe--Wills Eye Hospital. They were wee tyks in the 50s and traunatized, but their eyes are straight--an this was waaaay beore some nifty new operativ peocedures (I read medicine and watch medical vidos for fun. Shoud have gone to med school!) And tho it may seem like a ride to you, think of us who live way out west. I've got a minimum 3hr, max 2 day drive to see the people I need to. On the other hand, speed limit is 75 and the scenery is gorgeous.
duttin
03-14-2008, 11:33 PM
I also have had my bouts with bilaterial optical neuritis.
Currently on IV solu-medrol to try to clear it up,my last round of IV roids for the ON was at Christmas.
Sometimes it takes more than one treatment when dealing with optical neuritis,especially if you were treated for the opposite eye.
Heat sensativaty gets to my eyes and can bring out residual symptoms,but once the body temp returns to normal,I'm good to go for a while.
For the anxiety,theres several mild meds that help,some are addicting,since I have had the several bouts of ON, I did step out of my norm and went and seen the GP. We decided on buspar, a older med and not one that needs to build up in your system and its one you can take as you need.Which I like.
With visual disturbances,driving can be difficult and I can understand the sun and so forth.I have had to limit my driving.
Keep seeing a good neuro-opthamologist,my optho stated it can take months to heal.My vision like Nikki's has drastically changed without returning to the norm.
With having trouble being on the computer have you enlarged your zoom level,to make the print larger,you can also get a screen cover to help with the glare.
Hope you get some releif soon
T
Currently on IV solu-medrol to try to clear it up,my last round of IV roids for the ON was at Christmas.
Sometimes it takes more than one treatment when dealing with optical neuritis,especially if you were treated for the opposite eye.
Heat sensativaty gets to my eyes and can bring out residual symptoms,but once the body temp returns to normal,I'm good to go for a while.
For the anxiety,theres several mild meds that help,some are addicting,since I have had the several bouts of ON, I did step out of my norm and went and seen the GP. We decided on buspar, a older med and not one that needs to build up in your system and its one you can take as you need.Which I like.
With visual disturbances,driving can be difficult and I can understand the sun and so forth.I have had to limit my driving.
Keep seeing a good neuro-opthamologist,my optho stated it can take months to heal.My vision like Nikki's has drastically changed without returning to the norm.
With having trouble being on the computer have you enlarged your zoom level,to make the print larger,you can also get a screen cover to help with the glare.
Hope you get some releif soon
T
sadies mom
03-15-2008, 12:04 AM
I'm new to this forum but not to healthboards. I was recently dx'd with RRMS and am awaiting copaxone to be deliered and to start it. I have ALWAYS~my whole life had a problem with the heat. And it is weird~mostly from the neck up. I do get it after a shower and that part has gotten worse these past few years. Thankm God i'm home now and don't have to get out for work in the mornings. After a shower, I need to lay down for at least 15-30 minutes to calm my body down or I get the sweat.
It is embarrasing and I've always been the butt of crude and comments, even from family.
someone mentioned Philly~I went to see the neuro-opthamologists at Wills Eye; affiliated with Jeferson, and had oct testing after having EVP's her in central NJ. That exam is what confirmed the diagnosisi for me. I do consider myself fortunate in that I live midway between two of the best medical cities in the country.
MSnick~We must live close to each other??
It is embarrasing and I've always been the butt of crude and comments, even from family.
someone mentioned Philly~I went to see the neuro-opthamologists at Wills Eye; affiliated with Jeferson, and had oct testing after having EVP's her in central NJ. That exam is what confirmed the diagnosisi for me. I do consider myself fortunate in that I live midway between two of the best medical cities in the country.
MSnick~We must live close to each other??
MSNik
03-15-2008, 11:18 AM
Hi Sadies mom= YUP We must live close to each other....cant exactly give that info out here, its not allowed, but we can discuss doctors and facilities.
I actually live in Central NJ, ...I grew up in Philly in both south and northeast. I have used both Wills Eye Hosptial as well as the Jeff group for EYE stuff, but use Robert Wood Johnson for the MS Clinic...Dr. Jalbut is one of the best MS specialists in the east coast, and New Brunswick isnt that far from me.
I have a local Neuro, who is in my backyard whom I LOVE...and he happens to be in my insurance plan. I allow him to do all my meds and order my MRIs- but I take the results to both him, and my MS specialist twice a year...that way ive got the best of both worlds...a local Neuro with a whole lot of experience in taking care of MS patients, as well as a specialist on call should I need him.
My local guy is Mannish Viradia- if you know of him or need a good local Neuro, this is the guy with heart and personality; whereas the MS specialist has the extreme training and knowledge- his bedside manner is lacking!
I have had several bouts of ON and needed a good neuro-opthamologist. Ive used both one at JFK, Edison and one at Wills Eye- and actually one at Jeff in philly, but I tend to stick with the one at JFK the most just because he is easiest to get an appt with! My family is still in Philly and I cover that area for my job as well as 9 counties in NJ, so really, Im all over the place . I work with doctors, nurses and facilities- so when I need to make a doctors appt for ME, I simply cover that territory that day. Seems to work out well!
Let me know if you need any recommedations...appears we are very close in proximity.
Nikki
I actually live in Central NJ, ...I grew up in Philly in both south and northeast. I have used both Wills Eye Hosptial as well as the Jeff group for EYE stuff, but use Robert Wood Johnson for the MS Clinic...Dr. Jalbut is one of the best MS specialists in the east coast, and New Brunswick isnt that far from me.
I have a local Neuro, who is in my backyard whom I LOVE...and he happens to be in my insurance plan. I allow him to do all my meds and order my MRIs- but I take the results to both him, and my MS specialist twice a year...that way ive got the best of both worlds...a local Neuro with a whole lot of experience in taking care of MS patients, as well as a specialist on call should I need him.
My local guy is Mannish Viradia- if you know of him or need a good local Neuro, this is the guy with heart and personality; whereas the MS specialist has the extreme training and knowledge- his bedside manner is lacking!
I have had several bouts of ON and needed a good neuro-opthamologist. Ive used both one at JFK, Edison and one at Wills Eye- and actually one at Jeff in philly, but I tend to stick with the one at JFK the most just because he is easiest to get an appt with! My family is still in Philly and I cover that area for my job as well as 9 counties in NJ, so really, Im all over the place . I work with doctors, nurses and facilities- so when I need to make a doctors appt for ME, I simply cover that territory that day. Seems to work out well!
Let me know if you need any recommedations...appears we are very close in proximity.
Nikki
shell65
03-17-2008, 12:19 AM
I was diagnosed with ms in October and have not drove since October...they say I also have Blepharospasms in my eyes...but all the treatments they have done for it has not worked...i have been on MANY different meds and nothing....Both of my neuro's won't treat the ms they say it is not reoccuring and not clinical..but i definately have it according to the mri....My family doctor has just referred me to a new neuro he is ticked that they won't treat the ms to see if that will work for my eyes...its too the point where they will not open and the headaches are incredible.....
Shel
Shel
vonnag
03-26-2008, 12:20 PM
Thanks for explaining the difference in the two eye doctors MS Nik. I didn't know this. I'm gonna check my appointment I have coming up and make sure it is for an opthomologist.