Moldova
06-27-2008, 11:33 AM
Good day to everybody! I hope new day will bring you some relieve and happiness...
I saw my Neurologist yesterday in NYC. He asked me how was I diagnosed with ON. I told him that they put drops and than looked into my eyes, than took pictures...
He said that this type test brings a lot of falce positive dx.
He wants me to go to Cornell Hospital and have this done in a right way. It means they use the needle IV and than they take pictures and they have a special machine which they use on you while you laying in bed. Test called VERA R/O.
And than another test also related to dx MS: called SSEP (Tibial or Peronial/ medial...) Sorry I couldn't read at the end.
He said that if 2 test will be positive than I have to have spinal tab to finally confirm. He said that without those 2 test being positive and than spinal tab without having MS antibodies - MS can't be confirmed if your MRI has no leasions.
He also said that even leasions can be sometimes for a different reasons, not MS related so he makes his patients have the above tests to 100% confirm the right dx. He said that a lots of people misdiagnosed in US; he has patients coming to him with MS dx by someone else with dx of ON and when he tests them - people never had ON or MS.. He said that the reason he dx them again because he suspect something else, not MS and he has to confirm the right dx. Meanwhile some of them were taking treatments... I don't like to hear this.
He is PHD in Neurology, goes over the country with lectures, specializes in MS and Neurological disorders - so I believe I am in a good hands. I go to him for 2 years already due to nerve damages after my spinal fusions.
What do you think about it?
Thanks and take care!:)
I saw my Neurologist yesterday in NYC. He asked me how was I diagnosed with ON. I told him that they put drops and than looked into my eyes, than took pictures...
He said that this type test brings a lot of falce positive dx.
He wants me to go to Cornell Hospital and have this done in a right way. It means they use the needle IV and than they take pictures and they have a special machine which they use on you while you laying in bed. Test called VERA R/O.
And than another test also related to dx MS: called SSEP (Tibial or Peronial/ medial...) Sorry I couldn't read at the end.
He said that if 2 test will be positive than I have to have spinal tab to finally confirm. He said that without those 2 test being positive and than spinal tab without having MS antibodies - MS can't be confirmed if your MRI has no leasions.
He also said that even leasions can be sometimes for a different reasons, not MS related so he makes his patients have the above tests to 100% confirm the right dx. He said that a lots of people misdiagnosed in US; he has patients coming to him with MS dx by someone else with dx of ON and when he tests them - people never had ON or MS.. He said that the reason he dx them again because he suspect something else, not MS and he has to confirm the right dx. Meanwhile some of them were taking treatments... I don't like to hear this.
He is PHD in Neurology, goes over the country with lectures, specializes in MS and Neurological disorders - so I believe I am in a good hands. I go to him for 2 years already due to nerve damages after my spinal fusions.
What do you think about it?
Thanks and take care!:)
Sponsor
Roadworker
06-27-2008, 02:18 PM
Moldova
HI, i am located in Long Island and on my way to being told i have PPMS. So far all my test including LP came out good. But doc still feels i have ms in the spin are ppms.
If i could ask you where in NYC is your doc located, i am not really that good at NYC to much onlt been there a few times. But i will be looking for a 2nd opinion once all the tests are done.
I have 1 more test in end of July then i will starting to find a ms doc. Ok thanks for your time .
Mike
HI, i am located in Long Island and on my way to being told i have PPMS. So far all my test including LP came out good. But doc still feels i have ms in the spin are ppms.
If i could ask you where in NYC is your doc located, i am not really that good at NYC to much onlt been there a few times. But i will be looking for a 2nd opinion once all the tests are done.
I have 1 more test in end of July then i will starting to find a ms doc. Ok thanks for your time .
Mike
Canadian gal
06-27-2008, 02:54 PM
I saw my Neurologist yesterday in NYC. He asked me how was I diagnosed with ON. I told him that they put drops and than looked into my eyes, than took pictures...
He said that this type test brings a lot of falce positive dx.
He wants me to go to Cornell Hospital and have this done in a right way. It means they use the needle IV and than they take pictures and they have a special machine which they use on you while you laying in bed. Test called VERA R/O.
ON is the ONE symptom that you have, which would not seem to fit with your other dx of Arachnoidities. I don't know anything about this particular test he is suggesting, but I agree that ON should be confirmed at this point. That is why I asked about it in your last thread, because I know that people are sometimes dx with ON and that's not what it is.
I didn't realize there was a test that could be done "after the fact" that might confirm you DID have ON. That's good to know, thanks.
And than another test also related to dx MS: called SSEP (Tibial or Peronial/ medial...) Sorry I couldn't read at the end..
Evoked Potentials, in this case "Somatosensory Evoked Response" or "Potential" is a common test for those who do not have lesions, or are otherwise difficult to dx. SSEP is used to double check whether the sensory part of the nerve is working correctly.
He said that if 2 test will be positive than I have to have spinal tab to finally confirm. He said that without those 2 test being positive and than spinal tab without having MS antibodies - MS can't be confirmed if your MRI has no leasions...
So, even if you get these tests, he can't confirm without the lesions and/or a LP? If you have no brain lesions, and you can't have a LP . . . what's the point in having the other tests? :confused:
He also said that even leasions can be sometimes for a different reasons, not MS related so he makes his patients have the above tests to 100% confirm the right dx. He said that a lots of people misdiagnosed in US; he has patients coming to him with MS dx by someone else with dx of ON and when he tests them - people never had ON or MS.. He said that the reason he dx them again because he suspect something else, not MS and he has to confirm the right dx. Meanwhile some of them were taking treatments... I don't like to hear this.
He is PHD in Neurology, goes over the country with lectures, specializes in MS and Neurological disorders - so I believe I am in a good hands. I go to him for 2 years already due to nerve damages after my spinal fusions.
What do you think about it?
Thanks and take care!:)
I agree that a number of people who really don't have CONFIRMED MS, might get the dx prematurely. It may be that they are "Clinically Isolated Syndrome" (CIS), which means they "appear" to have MS, but it can't be confirmed as yet. There is no concensus between specialists about whether these people should wait, or be treated . . . so some do, and some don't.
There is fairly strict criteria for a MS dx . . . but some neuros recognize that there are people who don't quite fit that criteria, yet "probably" have it. Some will dx and treat on that basis, and some won't. MS lesions are known to hide in the brain and spine . . . so they go with their gut.
Remember, it wasn't that many years ago that we didn't have MRI's to rely on. Quite often they'd through us in a tub of warm water and watch us squirm in order to dx. Things have improved, but it's not fool-proof.
Your dx will be difficult, with the other spinal condition you have.
Cherie
He said that this type test brings a lot of falce positive dx.
He wants me to go to Cornell Hospital and have this done in a right way. It means they use the needle IV and than they take pictures and they have a special machine which they use on you while you laying in bed. Test called VERA R/O.
ON is the ONE symptom that you have, which would not seem to fit with your other dx of Arachnoidities. I don't know anything about this particular test he is suggesting, but I agree that ON should be confirmed at this point. That is why I asked about it in your last thread, because I know that people are sometimes dx with ON and that's not what it is.
I didn't realize there was a test that could be done "after the fact" that might confirm you DID have ON. That's good to know, thanks.
And than another test also related to dx MS: called SSEP (Tibial or Peronial/ medial...) Sorry I couldn't read at the end..
Evoked Potentials, in this case "Somatosensory Evoked Response" or "Potential" is a common test for those who do not have lesions, or are otherwise difficult to dx. SSEP is used to double check whether the sensory part of the nerve is working correctly.
He said that if 2 test will be positive than I have to have spinal tab to finally confirm. He said that without those 2 test being positive and than spinal tab without having MS antibodies - MS can't be confirmed if your MRI has no leasions...
So, even if you get these tests, he can't confirm without the lesions and/or a LP? If you have no brain lesions, and you can't have a LP . . . what's the point in having the other tests? :confused:
He also said that even leasions can be sometimes for a different reasons, not MS related so he makes his patients have the above tests to 100% confirm the right dx. He said that a lots of people misdiagnosed in US; he has patients coming to him with MS dx by someone else with dx of ON and when he tests them - people never had ON or MS.. He said that the reason he dx them again because he suspect something else, not MS and he has to confirm the right dx. Meanwhile some of them were taking treatments... I don't like to hear this.
He is PHD in Neurology, goes over the country with lectures, specializes in MS and Neurological disorders - so I believe I am in a good hands. I go to him for 2 years already due to nerve damages after my spinal fusions.
What do you think about it?
Thanks and take care!:)
I agree that a number of people who really don't have CONFIRMED MS, might get the dx prematurely. It may be that they are "Clinically Isolated Syndrome" (CIS), which means they "appear" to have MS, but it can't be confirmed as yet. There is no concensus between specialists about whether these people should wait, or be treated . . . so some do, and some don't.
There is fairly strict criteria for a MS dx . . . but some neuros recognize that there are people who don't quite fit that criteria, yet "probably" have it. Some will dx and treat on that basis, and some won't. MS lesions are known to hide in the brain and spine . . . so they go with their gut.
Remember, it wasn't that many years ago that we didn't have MRI's to rely on. Quite often they'd through us in a tub of warm water and watch us squirm in order to dx. Things have improved, but it's not fool-proof.
Your dx will be difficult, with the other spinal condition you have.
Cherie
Moldova
06-27-2008, 03:10 PM
Lady Express,
yes, he said that since you had dx with ON - it's always there. No such thing for this to come and go. That is why so important for him to know this that even if I don't have MS - this ON condition must be treated with steroids since it can cause blindness.
SSEP test is when they take spinal nerves and see how they "communicate" with brain. He said that it will be uncomfortable test for me since I have extensive nerve damages already but it has to be done.
Only if both of them will be positive - than he sends me to STab done. If all of them will be positive - than I do have MS without leasions shown. I do have so many other symptoms and they can belong to MS or some other conditions.
I feel I am very blessed that he is such a great Doctor who does not believe in put patients on treatments or false dx them; he believes in100% confirming dx. I am so happy and respect him for this, really. I wouldn't want any other way, but the right way.
yes, he said that since you had dx with ON - it's always there. No such thing for this to come and go. That is why so important for him to know this that even if I don't have MS - this ON condition must be treated with steroids since it can cause blindness.
SSEP test is when they take spinal nerves and see how they "communicate" with brain. He said that it will be uncomfortable test for me since I have extensive nerve damages already but it has to be done.
Only if both of them will be positive - than he sends me to STab done. If all of them will be positive - than I do have MS without leasions shown. I do have so many other symptoms and they can belong to MS or some other conditions.
I feel I am very blessed that he is such a great Doctor who does not believe in put patients on treatments or false dx them; he believes in100% confirming dx. I am so happy and respect him for this, really. I wouldn't want any other way, but the right way.
Nenu
06-27-2008, 03:15 PM
Moldova, I'm glad to hear you have a good doctor working for and with you. Good luck sweetie!! :)
Bearygood
06-27-2008, 03:53 PM
Moldova, who is the neurologist you're seeing? (You can post doctor's names and locations but not phone numbers.)
Re: ON, I am going to look up the tests that have been ordered as I'm not familiar with them. However, I don't agree with everything you wrote.
I absolutely believe that CURRENT cases of ON can be dxed by examination if you have a GOOD neuro-ophthalmologist who knows what they're doing. I love my neuro-op and although there was no question I had ON, she STILL did an MRI of my optics to confirm. I've since had a follow-up MRI of the optics to see if there were any changes. She also did OCT -- short for Optical Coherence Tomograhy. Not all docs have this equipement but they can take a picture of the optic nerve. It's regarded as a good tool for a baseline and some feel that it can even be used a tool for predicting MS or that it's heading that way. My neuro-op does not necessarily agree that's the case -- at least with the technology now available and in cases where someone already had had ON. (She does feel it can still now be potentially helpful diagnostically where there has been no prior optic nerve impairment.)
As far as not having steroids and going blind, this is incorrect as a general statement. The reason to have steroids for ON (IV and then oral, never oral alone) is to bring down the inflammation quickly. Recovery is expected to be quicker than cases where steroids are not administered (although I've seen where this is not always the case). This is especially important in cases where the optic nerve is not in good shape so no more damage is done. That said, if the optic nerve is in good shape (usually indicated by the color or lack thereof), recovery from ON without steroids is usually the same as if you had been treated with them, albeit usually more slowly.
The tests you are getting may be better equipped to deal with dxing older cases of ON, checking for residual effects. I will definitely look them up so thanks for the info. If you want more info. on how/why ON is treated the way it is, look up ONTT or Optic Neuritis Treatment Trials.
Re: ON, I am going to look up the tests that have been ordered as I'm not familiar with them. However, I don't agree with everything you wrote.
I absolutely believe that CURRENT cases of ON can be dxed by examination if you have a GOOD neuro-ophthalmologist who knows what they're doing. I love my neuro-op and although there was no question I had ON, she STILL did an MRI of my optics to confirm. I've since had a follow-up MRI of the optics to see if there were any changes. She also did OCT -- short for Optical Coherence Tomograhy. Not all docs have this equipement but they can take a picture of the optic nerve. It's regarded as a good tool for a baseline and some feel that it can even be used a tool for predicting MS or that it's heading that way. My neuro-op does not necessarily agree that's the case -- at least with the technology now available and in cases where someone already had had ON. (She does feel it can still now be potentially helpful diagnostically where there has been no prior optic nerve impairment.)
As far as not having steroids and going blind, this is incorrect as a general statement. The reason to have steroids for ON (IV and then oral, never oral alone) is to bring down the inflammation quickly. Recovery is expected to be quicker than cases where steroids are not administered (although I've seen where this is not always the case). This is especially important in cases where the optic nerve is not in good shape so no more damage is done. That said, if the optic nerve is in good shape (usually indicated by the color or lack thereof), recovery from ON without steroids is usually the same as if you had been treated with them, albeit usually more slowly.
The tests you are getting may be better equipped to deal with dxing older cases of ON, checking for residual effects. I will definitely look them up so thanks for the info. If you want more info. on how/why ON is treated the way it is, look up ONTT or Optic Neuritis Treatment Trials.
Bearygood
06-27-2008, 04:57 PM
Test called VERA R/O.
I can't find this exactly but I think but it looks like it might be another form of a VER (Visual Evoked Response). When/if you learn the specifics I'd be interested in learning more about it.
Good luck with tests, Moldova!
I can't find this exactly but I think but it looks like it might be another form of a VER (Visual Evoked Response). When/if you learn the specifics I'd be interested in learning more about it.
Good luck with tests, Moldova!
MSNik
06-27-2008, 06:31 PM
Moldova - Hi. I know your excited, but I have to agree with Bearygood and DISagree with this doctor, especially on this one: with ON - it's always there. No such thing for this to come and go. That is why so important for him to know this that even if I don't have MS - this ON condition must be treated with steroids since it can cause blindness.
ON Doesnt always cause blindness- and in many cases, they choose NOT to treat it with steriods for two reasons, it isnt that severe or the person with it is at high risk for steroid related problems. Also, they can avoid steroids if you were treated with them in the past 3 months for any other reason or for ON previously....Also, I have had ON three times, I go back for checkups regularly- it has completly healed from my last bout- and there is NO SIGN of it in my eye at this time...I was just checked a few weeks ago.
WHen I go, I am checked by the same machine that Bearygood mentions, the
OCT test.
I dont want to be negative in anyway, but I would never trust a Neuro with my eyes- also, the doctor whom you saw is simply a Neuro, treating everything from migranes to Parkinson's patients, in his history, I see very little about any work with MS- Id be skeptical about anything he says unless he is a specialist dealing with this stuff daily- not that I know for sure that he isnt; I just dont see anything about anything referring to his MS knowledge.
For my EYES and for my ON, I see the head of NeuroOpthamology at Edison JFK Hosptial- I have every faith in my doctor when it comes to my eyes..ive aleady given you the name of Dr. Jalbut for an MS Specialist..
Please do more research ...if you have ON, its going to heal on its own or with or without steroids, although steroids can speed it up quite a bit...and if you have MS, you really need to be seen by a MS Specialist...the doctors you are seeing are contrdicting themselves to a certain extent....some of the info makes sense from a neurological standpoint, but not from an opthamologic one.
Nikki
ON Doesnt always cause blindness- and in many cases, they choose NOT to treat it with steriods for two reasons, it isnt that severe or the person with it is at high risk for steroid related problems. Also, they can avoid steroids if you were treated with them in the past 3 months for any other reason or for ON previously....Also, I have had ON three times, I go back for checkups regularly- it has completly healed from my last bout- and there is NO SIGN of it in my eye at this time...I was just checked a few weeks ago.
WHen I go, I am checked by the same machine that Bearygood mentions, the
OCT test.
I dont want to be negative in anyway, but I would never trust a Neuro with my eyes- also, the doctor whom you saw is simply a Neuro, treating everything from migranes to Parkinson's patients, in his history, I see very little about any work with MS- Id be skeptical about anything he says unless he is a specialist dealing with this stuff daily- not that I know for sure that he isnt; I just dont see anything about anything referring to his MS knowledge.
For my EYES and for my ON, I see the head of NeuroOpthamology at Edison JFK Hosptial- I have every faith in my doctor when it comes to my eyes..ive aleady given you the name of Dr. Jalbut for an MS Specialist..
Please do more research ...if you have ON, its going to heal on its own or with or without steroids, although steroids can speed it up quite a bit...and if you have MS, you really need to be seen by a MS Specialist...the doctors you are seeing are contrdicting themselves to a certain extent....some of the info makes sense from a neurological standpoint, but not from an opthamologic one.
Nikki
Bearygood
06-28-2008, 02:32 PM
Moldova, I went back to look at a few of your earlier posts here. I didn't look at them all so please remind me/us. You said it was your eye doctor who originally dxed you with ON and who ordered the MRIs. What I didn't find is if you wound up having an MRI of your orbits as well as your brain and if she did a visual field test. It's a test where you look at flashing lights and press the button when you see them -- did she do that?
As far as your neuro, I have a feeling some of the information was misunderstood.
How is your vision now?
As far as your neuro, I have a feeling some of the information was misunderstood.
How is your vision now?
Moldova
06-28-2008, 04:11 PM
Yes, I did have that test although my eye MD told me that we can't relay 100% on this test to diagnose ON. In fact I had this done many times before when I had my early exam (before I was diagnosed with ON). Just regular Ophtalmologist (2 of them in same office ) dx me with it.
My Neurologist told me that ON can be from severe to a very mild. Because I totally lost ability to see colors (everything was grey), I did not see much with my left eye, just very blurry - he thinks I do need this to be treated as soon as it will have 100% right diagnoses. It's not that he does not trust local Dr, he is just very tough when it comes to dx and treatments.
You are absolutely right about Neurologist and MS specialist. I definitely will see MS specialist too. Dr who I see now is excellent specialist, that is why I trust him very much. He works with severely damaged and paralized patients whose nerves of spinal cords and extremedies preventing them to move.
I agree to certain extend that a good MS specialist is preferable in dx. The thing is: i believe in couple opinions, I love to consult someone like him with such experience and reputation especially he takes care of me for 3 years already due to my nerve damages after spinal fusions.
I did have MRI of the brain, and whole spine. Everything looks clear from leasions... I am lucky so far...Who knows?
He told me that Professor at Cornell performs a lots of newest tests available to diagnose ON and MS... Since MS is relatively new dx, every year they add more and more tests to be able to diagnose it better since a lots of cases get wrong dx or misdiagnosed for MS.
I am not sure about ON being on and off, but according to him if it's not treated on time, in some cases can cause blindness; he mentioned that if ON is not severe can be harmless and some people may not even know they have it, but in case when people loose ab. to see colors or to see on that eye at all (that what happened to me include a lots of pain with it) - can cause permanent damage to ON.
In fact, I read same thing on Internet, luckily they have so much information on this matter. Seems to me that so far nobody knows with 100% accuracy what is exactly must be done if this happens or that... and how to dx this symptoms or that...
My ex-client was diagnosed with MS when she had speech and walking problems already. She went to so many Drs for so many years complaining and complaining and if you would hear how many dx they had on her. Everybody sent her to a different tests, they all had their own opinions which was contradicted with the prevous DR... Really sad.
I believe in a good Drs, in couple of opinions, in having the right tests done and to be on top of all this. Having as many specialists as needed to be dx right - this is the key for me.
My son was dx with lymphoma at age 14 at Sloan in NYC... We had ex-rays done localy and they told us he is OK, nothing is wrong. But his pediatrician was concern about something and suggested to see a DR at Sloan.
We took same ex-rays and his DR there in 2 seconds of looking at same ex-rays they looked over here told us that his tymos glands enlarged and how come nobody told you about it before. We lost 6 month and sent him for unnesessery surgery because of this. So since than I learned my lesson: go and seek other opinions no matter how good is your DR and how much you trust him.
Thank you and all the best to all of you!
My Neurologist told me that ON can be from severe to a very mild. Because I totally lost ability to see colors (everything was grey), I did not see much with my left eye, just very blurry - he thinks I do need this to be treated as soon as it will have 100% right diagnoses. It's not that he does not trust local Dr, he is just very tough when it comes to dx and treatments.
You are absolutely right about Neurologist and MS specialist. I definitely will see MS specialist too. Dr who I see now is excellent specialist, that is why I trust him very much. He works with severely damaged and paralized patients whose nerves of spinal cords and extremedies preventing them to move.
I agree to certain extend that a good MS specialist is preferable in dx. The thing is: i believe in couple opinions, I love to consult someone like him with such experience and reputation especially he takes care of me for 3 years already due to my nerve damages after spinal fusions.
I did have MRI of the brain, and whole spine. Everything looks clear from leasions... I am lucky so far...Who knows?
He told me that Professor at Cornell performs a lots of newest tests available to diagnose ON and MS... Since MS is relatively new dx, every year they add more and more tests to be able to diagnose it better since a lots of cases get wrong dx or misdiagnosed for MS.
I am not sure about ON being on and off, but according to him if it's not treated on time, in some cases can cause blindness; he mentioned that if ON is not severe can be harmless and some people may not even know they have it, but in case when people loose ab. to see colors or to see on that eye at all (that what happened to me include a lots of pain with it) - can cause permanent damage to ON.
In fact, I read same thing on Internet, luckily they have so much information on this matter. Seems to me that so far nobody knows with 100% accuracy what is exactly must be done if this happens or that... and how to dx this symptoms or that...
My ex-client was diagnosed with MS when she had speech and walking problems already. She went to so many Drs for so many years complaining and complaining and if you would hear how many dx they had on her. Everybody sent her to a different tests, they all had their own opinions which was contradicted with the prevous DR... Really sad.
I believe in a good Drs, in couple of opinions, in having the right tests done and to be on top of all this. Having as many specialists as needed to be dx right - this is the key for me.
My son was dx with lymphoma at age 14 at Sloan in NYC... We had ex-rays done localy and they told us he is OK, nothing is wrong. But his pediatrician was concern about something and suggested to see a DR at Sloan.
We took same ex-rays and his DR there in 2 seconds of looking at same ex-rays they looked over here told us that his tymos glands enlarged and how come nobody told you about it before. We lost 6 month and sent him for unnesessery surgery because of this. So since than I learned my lesson: go and seek other opinions no matter how good is your DR and how much you trust him.
Thank you and all the best to all of you!
Bearygood
06-28-2008, 04:32 PM
Moldova, I know now that my ophthalmologist knew what I had but didn't tell me. She sent me to a neuro-ophthalmologist. From there (actually, from the second neuro-op I saw) I went on to an MS specialist. There was no doubt I had ON from examination, visual field test results and my (2nd) neuro-op did an MRI of my optics. It is my understanding that if ON is present, you will see the lesion on the optic nerve. I was administered contrast during the MRI of the optics and sure enough, mine lit up like a Christmas tree! Lesions will not appear active forever, even if there is still inflammation so I'm thinking this is why your neuro wants to administer these other tests. But like I said before, a good neuro-op is capable of dxing ON. I think it would still be a good idea for you to visit a neuro-op for continued care after you get done with this battery of tests. Since you're traveling into the city anyway, you might want to ask your doctor about Dr. Moazami. He may have another neuro-op referral for you but chances are he's heard of my doctor.
The main MS specialist associated with Cornell, Dr. Apatoff, recently left. I don't know why or where he went but just FYI, there have been recent changes there. I don't know about the other doctors in the Cornell MS unit but most people I know who were seeing Dr. Apatoff liked him a lot.
As far as steroids, like I said, I think there may have been a misunderstanding. It IS true that if the optic nerve is not in good shape and inflammation is not brought down quickly, there can be more severe and irreparable damage. A neuro-op is the best one equipped to tell the condition of the optic nerve. Since mine was in good shape (the pallor was intact) and I had already hit the peak of ON, I opted for no steroids. My neuro-op kept close tabs on me the first couple of months to make sure my vision was recovering. If for one moment it looked like it wasn't, I would have gone right on steroids. I was very lucky that repeated visual field tests steadily showed improvement. It really depends on the shape of the nerve and I think whether or not you are in an acute phase. (I'm really not sure steroids will make a difference if you are past a certain point -- definitely ask the doctor about that.) It is true that ON can range from silent to severe. Based on your sx, I am very surprised that the doctor who dxed you with ON did not put you on steroids right away.
In any event, I am glad you feel you are in good hands now. Please let us know how your tests go and regardless of what happens, I hope you go see a neuro-ophthalmologist as well. A good one can be a very helpful part of the team as they are certified in BOTH neurology and ophthalmology.
The main MS specialist associated with Cornell, Dr. Apatoff, recently left. I don't know why or where he went but just FYI, there have been recent changes there. I don't know about the other doctors in the Cornell MS unit but most people I know who were seeing Dr. Apatoff liked him a lot.
As far as steroids, like I said, I think there may have been a misunderstanding. It IS true that if the optic nerve is not in good shape and inflammation is not brought down quickly, there can be more severe and irreparable damage. A neuro-op is the best one equipped to tell the condition of the optic nerve. Since mine was in good shape (the pallor was intact) and I had already hit the peak of ON, I opted for no steroids. My neuro-op kept close tabs on me the first couple of months to make sure my vision was recovering. If for one moment it looked like it wasn't, I would have gone right on steroids. I was very lucky that repeated visual field tests steadily showed improvement. It really depends on the shape of the nerve and I think whether or not you are in an acute phase. (I'm really not sure steroids will make a difference if you are past a certain point -- definitely ask the doctor about that.) It is true that ON can range from silent to severe. Based on your sx, I am very surprised that the doctor who dxed you with ON did not put you on steroids right away.
In any event, I am glad you feel you are in good hands now. Please let us know how your tests go and regardless of what happens, I hope you go see a neuro-ophthalmologist as well. A good one can be a very helpful part of the team as they are certified in BOTH neurology and ophthalmology.
MSNik
06-28-2008, 11:54 PM
moldova, I hope I didnt offend you with my post. I read your comments, thoroughly, and have to agree that having more than one (or several) opinions is ALWAYS a good idea no matter what. I didnt know about your son, and Im terribly sorry to hear that he/you were put through that. I can see why you would be adamant about your quality of care and doing anything you can to be sure of what is going on.
I also happen to agree with Bearygood- Ive heard of her doctor and have only heard great things- I also happen to really like mine, at JFK. However, the points she made, especially about when and why to use Steroids, make really good sense. I think that my first bout with ON was the worst. I, too, lost complete ability to see colors...it went on until I did the steroids and then reversed itself. I had extreme pain and no peripheral vision at all the first time. Steroids did help...however, the second time, less than a year later, I had no vision of reds or greens...everything else was intact, but no peripheral vision again. I immediately went to see my Neuro-Opthamolgist a second time, who opted NOT to put me on steroids as there was no significant damage...like Beary's doc, he had me in there every 2 weeks watching it and repeating tests...it DID clear up.
A year later, at a regular eye exam (opthamologist- I do wear glasses and contacts) he saw that the optic nerve was inflamed and sent me back yet again to the Neuro-Op...this time, he felt it was very minor, possibly left over from the last time. My vision wasnt impaired, I didnt have any pain, didnt even know it was there- so we left it alone. A month later, I went back to get it rechecked, there was no sign of ON...6 months later (last week) I went for an exam with the Neuro-Op again, and everything was good..
intermittently, I still have eye pain, looking to the left usually and always with my right eye, but when I go to the opthamologist to have it checked, he tells me it looks healthy. So I try to ignore it as "residual pain".
ANyway, your smart to do what you think is best...but Ill still agree, go see a Neuro=Opth when you are convinced either way...they stil specialize in this sort of thing, and they are a good place for comparison dx - if nothing else.
Please keep in touch?
Nikki
I also happen to agree with Bearygood- Ive heard of her doctor and have only heard great things- I also happen to really like mine, at JFK. However, the points she made, especially about when and why to use Steroids, make really good sense. I think that my first bout with ON was the worst. I, too, lost complete ability to see colors...it went on until I did the steroids and then reversed itself. I had extreme pain and no peripheral vision at all the first time. Steroids did help...however, the second time, less than a year later, I had no vision of reds or greens...everything else was intact, but no peripheral vision again. I immediately went to see my Neuro-Opthamolgist a second time, who opted NOT to put me on steroids as there was no significant damage...like Beary's doc, he had me in there every 2 weeks watching it and repeating tests...it DID clear up.
A year later, at a regular eye exam (opthamologist- I do wear glasses and contacts) he saw that the optic nerve was inflamed and sent me back yet again to the Neuro-Op...this time, he felt it was very minor, possibly left over from the last time. My vision wasnt impaired, I didnt have any pain, didnt even know it was there- so we left it alone. A month later, I went back to get it rechecked, there was no sign of ON...6 months later (last week) I went for an exam with the Neuro-Op again, and everything was good..
intermittently, I still have eye pain, looking to the left usually and always with my right eye, but when I go to the opthamologist to have it checked, he tells me it looks healthy. So I try to ignore it as "residual pain".
ANyway, your smart to do what you think is best...but Ill still agree, go see a Neuro=Opth when you are convinced either way...they stil specialize in this sort of thing, and they are a good place for comparison dx - if nothing else.
Please keep in touch?
Nikki
Moldova
06-30-2008, 10:56 AM
Nothing but a big Thank you to all of you - what would I do without you? No reason to feel offended - are you kidding?
I entered this MS world without having any knowledge (we all have attitude: it will not happen to me, right?) and only because of you in such short time I learned more than I knew all my life regarding this matter...
I always love to hear many opinions about something I do research on - so your input greatly appreciated!!
My Neurologist told me about your Dr and mentioned that "unfortunatelly he changed his job, but they have some other DRs who I would like to discuss your case with".
I think that it was somebody here (maybe include myself) who did not do their job right; my Opth. Dr got so panicy and left me in a room calling Neurologist right the way to see me ASAP. So I went. Than MRI's tests and so on, so either she forgot to tell me to come back and see what she wants to do, or I should of asking what is next (but how do I know?) - but definetely I was left without knowing next step. But since I saw my regular Neurologist at NYC (Lexington Avenue - NYC, Cornell, HSS and NYC Hospital. Dr Dexter Sun) at least I have directions now what is next step.
He doesn't like steroids for me because I was already 2 times this year due to my other problems. I had 9 steroidal shots during last 2 years in my spine (epidurals, nerve blocks) and non of them worked for me.
That is why whe really wants me to be 100% sure either I need them or not.
I did the reasearch on looking Neuro ophto. in my area, but i did not find anybody. I called my eye MD to find out - they don't know of anybody either (??).
Thank you so much again and the best wishes to all of you, my friends!:)
I entered this MS world without having any knowledge (we all have attitude: it will not happen to me, right?) and only because of you in such short time I learned more than I knew all my life regarding this matter...
I always love to hear many opinions about something I do research on - so your input greatly appreciated!!
My Neurologist told me about your Dr and mentioned that "unfortunatelly he changed his job, but they have some other DRs who I would like to discuss your case with".
I think that it was somebody here (maybe include myself) who did not do their job right; my Opth. Dr got so panicy and left me in a room calling Neurologist right the way to see me ASAP. So I went. Than MRI's tests and so on, so either she forgot to tell me to come back and see what she wants to do, or I should of asking what is next (but how do I know?) - but definetely I was left without knowing next step. But since I saw my regular Neurologist at NYC (Lexington Avenue - NYC, Cornell, HSS and NYC Hospital. Dr Dexter Sun) at least I have directions now what is next step.
He doesn't like steroids for me because I was already 2 times this year due to my other problems. I had 9 steroidal shots during last 2 years in my spine (epidurals, nerve blocks) and non of them worked for me.
That is why whe really wants me to be 100% sure either I need them or not.
I did the reasearch on looking Neuro ophto. in my area, but i did not find anybody. I called my eye MD to find out - they don't know of anybody either (??).
Thank you so much again and the best wishes to all of you, my friends!:)
Bearygood
06-30-2008, 12:16 PM
My Neurologist told me about your Dr and mentioned that "unfortunatelly he changed his job, but they have some other DRs who I would like to discuss your case with".
I think that it was somebody here (maybe include myself) who did not do their job right; my Opth. Dr got so panicy and left me in a room calling Neurologist right the way to see me ASAP. So I went. Than MRI's tests and so on, so either she forgot to tell me to come back and see what she wants to do, or I should of asking what is next (but how do I know?) - but definetely I was left without knowing next step. But since I saw my regular Neurologist at NYC (Lexington Avenue - NYC, Cornell, HSS and NYC Hospital. Dr Dexter Sun) at least I have directions now what is next step.
He doesn't like steroids for me because I was already 2 times this year due to my other problems. I had 9 steroidal shots during last 2 years in my spine (epidurals, nerve blocks) and non of them worked for me. That is why whe really wants me to be 100% sure either I need them or not.
I did the reasearch on looking Neuro ophto. in my area, but i did not find anybody. I called my eye MD to find out - they don't know of anybody either (??).
Moldova, Apatoff is/was not my doctor. I know many people who have gone to him. The doctor of mine I was talking about IS the neuro-ophthalmologist (and by the way, she's been more helpful to me than my MS specialist has!). Her name is Dr. Golnaz Moazami, up at Columbia Presbyterian. Re: the steroids, this is all becoming clearer why the neuro is doing these tests, etc. However, nothing still takes the place of a neuro-ophthalmologist when it comes to attending to neurological conditions of the eye. I would still try to see one, and quickly. Your neuro may have another suggestion for a neuro-op but at least you now have another personal recommendation.
As for someone not doing their job, it does sound like your regular ophthalmologist might have been a little lacking. As far as steroids go though -- again I do not know if they even help with ON in an acute phase so please ask about this. After all this, I wouldn't want to see you go on steroids if you don't need them and honestly, I think this is the most important point -- the reason to go on steroids is not simply the fact alone that someone has ON. The reason to go on steroids with ON is if the doctor believes the steroids will HELP the condition. These 2 things may sound the same but they're really not.
Just make sure they will help your condition in the state you're in (I'd point blank ask what benefits there are for you) and please, please, no matter what and whether it's Dr. Moazami or another one, get yourself to a good neuro-ophthalmologist!!
I think that it was somebody here (maybe include myself) who did not do their job right; my Opth. Dr got so panicy and left me in a room calling Neurologist right the way to see me ASAP. So I went. Than MRI's tests and so on, so either she forgot to tell me to come back and see what she wants to do, or I should of asking what is next (but how do I know?) - but definetely I was left without knowing next step. But since I saw my regular Neurologist at NYC (Lexington Avenue - NYC, Cornell, HSS and NYC Hospital. Dr Dexter Sun) at least I have directions now what is next step.
He doesn't like steroids for me because I was already 2 times this year due to my other problems. I had 9 steroidal shots during last 2 years in my spine (epidurals, nerve blocks) and non of them worked for me. That is why whe really wants me to be 100% sure either I need them or not.
I did the reasearch on looking Neuro ophto. in my area, but i did not find anybody. I called my eye MD to find out - they don't know of anybody either (??).
Moldova, Apatoff is/was not my doctor. I know many people who have gone to him. The doctor of mine I was talking about IS the neuro-ophthalmologist (and by the way, she's been more helpful to me than my MS specialist has!). Her name is Dr. Golnaz Moazami, up at Columbia Presbyterian. Re: the steroids, this is all becoming clearer why the neuro is doing these tests, etc. However, nothing still takes the place of a neuro-ophthalmologist when it comes to attending to neurological conditions of the eye. I would still try to see one, and quickly. Your neuro may have another suggestion for a neuro-op but at least you now have another personal recommendation.
As for someone not doing their job, it does sound like your regular ophthalmologist might have been a little lacking. As far as steroids go though -- again I do not know if they even help with ON in an acute phase so please ask about this. After all this, I wouldn't want to see you go on steroids if you don't need them and honestly, I think this is the most important point -- the reason to go on steroids is not simply the fact alone that someone has ON. The reason to go on steroids with ON is if the doctor believes the steroids will HELP the condition. These 2 things may sound the same but they're really not.
Just make sure they will help your condition in the state you're in (I'd point blank ask what benefits there are for you) and please, please, no matter what and whether it's Dr. Moazami or another one, get yourself to a good neuro-ophthalmologist!!
Moldova
07-02-2008, 02:20 PM
Thank you so much! I can feel how much you care -you are such wonderful person.
God Bless you and I hope your condition will improve!
Ones again thanks for everything!:)
God Bless you and I hope your condition will improve!
Ones again thanks for everything!:)