Discussions By Condition: Autoimmune Disease

optic neuritis link with autoimmune disease

Posted In: Autoimmune Disease 33 Replies
  • Posted By: Anonymous
  • September 15, 2007
  • 08:42 AM

Five months ago I went to the optometrist suffering from blurred vision and severe pain in my left eye. He was very thourough in his check up and sent me straight to an opthamologist who diagnosed with me with Acute Optic Neuritis. My next port of call was the neurologist who put me on a course of oral Prednisolone and ordered an MRI to confirm or rule out M.S. This was ruled out as nothing unusual showed up. After 2 weeks of taking medication my vision returned to about 90% however, 8 medication free days later I started losing my vision again. This time I went totally blind in my left eye. Treatment: M.R.I. (clear again), 3 doses of I.V. Pred over 3 days followed by 2 weeks oral Pred. Vision then returned to about 80%. Once again after 8 medication free days my vision went again. Doctors kept treating me with oral Pred for 2 weeks. This was to happen a total of 4 times in 4 months. Every time I went off the Prednisolone, after 8 days I would lose my vision. My G.P ordered blood test, which showed up very high levels of anti-nuclear antibodies suggesting an autoimmune disease. The haematologist I am now seeing had not heard of O.N recurring so frequently nor had any of the opthamologists I have seen. Therefore because nothing definite showed up in my blood results they have put me in a unique box and can't tell me what I have. I am now being treated with the immuno-suppressant Azathioprine, (and suffering a few unwanted side effects). This is to suppress my immune system and to stop it from attacking my optic nerve. They can only treat the symptom (optic neuritis) because they don't know the cause. I am interested to know if anyone else has gone through this or any similar circumstances.

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  • I am a 55 year old female with an auto-immune disease. I test positive for Anti-nuclear antibodies and have been diagnosed with Fibromyalgia, MCTD, Sclerderma, Rheumatoid Arthritis. Today I saw an opthamologist who told me that I have a deformed optic nerve. That it is much different than my right eye. He suggested that it my be Glaucoma and has scheduled me to have Visual Field Testing. I would like to know more about the connection of Auto-immune Disease and Glaucoma. If you can help me please respond to mghampton@yahoo.com. Five months ago I went to the optometrist suffering from blurred vision and severe pain in my left eye. He was very thourough in his check up and sent me straight to an opthamologist who diagnosed with me with Acute Optic Neuritis. My next port of call was the neurologist who put me on a course of oral Prednisolone and ordered an MRI to confirm or rule out M.S. This was ruled out as nothing unusual showed up. After 2 weeks of taking medication my vision returned to about 90% however, 8 medication free days later I started losing my vision again. This time I went totally blind in my left eye. Treatment: M.R.I. (clear again), 3 doses of I.V. Pred over 3 days followed by 2 weeks oral Pred. Vision then returned to about 80%. Once again after 8 medication free days my vision went again. Doctors kept treating me with oral Pred for 2 weeks. This was to happen a total of 4 times in 4 months. Every time I went off the Prednisolone, after 8 days I would lose my vision. My G.P ordered blood test, which showed up very high levels of anti-nuclear antibodies suggesting an autoimmune disease. The haematologist I am now seeing had not heard of O.N recurring so frequently nor had any of the opthamologists I have seen. Therefore because nothing definite showed up in my blood results they have put me in a unique box and can't tell me what I have. I am now being treated with the immuno-suppressant Azathioprine, (and suffering a few unwanted side effects). This is to suppress my immune system and to stop it from attacking my optic nerve. They can only treat the symptom (optic neuritis) because they don't know the cause. I am interested to know if anyone else has gone through this or any similar circumstances.
    Anonymous 42789 Replies
    • October 3, 2007
    • 09:46 AM
    • 0
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  • Five months ago I went to the optometrist suffering from blurred vision and severe pain in my left eye. He was very thourough in his check up and sent me straight to an opthamologist who diagnosed with me with Acute Optic Neuritis. My next port of call was the neurologist who put me on a course of oral Prednisolone and ordered an MRI to confirm or rule out M.S. This was ruled out as nothing unusual showed up. After 2 weeks of taking medication my vision returned to about 90% however, 8 medication free days later I started losing my vision again. This time I went totally blind in my left eye. Treatment: M.R.I. (clear again), 3 doses of I.V. Pred over 3 days followed by 2 weeks oral Pred. Vision then returned to about 80%. Once again after 8 medication free days my vision went again. Doctors kept treating me with oral Pred for 2 weeks. This was to happen a total of 4 times in 4 months. Every time I went off the Prednisolone, after 8 days I would lose my vision. My G.P ordered blood test, which showed up very high levels of anti-nuclear antibodies suggesting an autoimmune disease. The haematologist I am now seeing had not heard of O.N recurring so frequently nor had any of the opthamologists I have seen. Therefore because nothing definite showed up in my blood results they have put me in a unique box and can't tell me what I have. I am now being treated with the immuno-suppressant Azathioprine, (and suffering a few unwanted side effects). This is to suppress my immune system and to stop it from attacking my optic nerve. They can only treat the symptom (optic neuritis) because they don't know the cause. I am interested to know if anyone else has gone through this or any similar circumstances. Slightly similar. Maybe I can give a little help. I had neurological left-side face pain off-and-on for 50 years. Eventually I also got a variety of strange skin problems, also beginning on the left side of the face. Then I began getting a few pains in the left eye and occasional temporary dimming of vision. After all that, I also developed mouth sores, again beginning on the left side. After a long difficult struggle to get diagnosed, I finally traveled over 500 miles to a major medical center where I got a biopsy that was sent to a specialized lab for staining and immunofluorescence, finally proving the diagnosis of a rare autoimmune disease (mine is pemphigoid). That means, of course, that they still don't know the cause. That's a topic on which you can visit many websites and read many books. I've found out that there are ophthalmologists who have a subspecialty in uveitis and/or immunology. Probably your next step should be to find one of those people. You may have to travel. Be warned that all the standard medications for autoimmune diseases have serious side effects. That includes the steroids (cortisones). Use them if you must. Also be aware that with steroids, you get a rebound effect, meaning your body adapts to them, so you can't easily stop them without getting worse than you were before you took them. You have to taper off gradually, if and when you can. Other than that, all I can say is try to figure out what triggers your flareups. I'm still working on that, myself. Is it a food, a food additive or ingredient, barometric pressure, blood pressure, dental work, dental materials, something environmental? You might also want to try some "alternative" treatments, but they have side effects, too, so research before trying. I hope this is some help.
    AgnosticJaz 23 Replies
    • October 5, 2007
    • 00:58 AM
    • 0
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  • Thanks for that, I will definitly discuss a few things that you have mentioned with my doctor. I have an appointment with my haematologist next week to see if anything new has come up in recent blood tests. I will also be seeing an Immunologist in the next few weeks. I have almost weaned off the Pred medication and should be off it in two weeks. However, I still must take 150mg of Azathioprine daily, (which is to replace the Prednisolone) or I will loose my vision. My doctor does not want me to stop taking the drug for fear of my immune sysem attacking my other optic nerve or any other organ in my body. They have suggested that I can slowly taper off this drug in about 12 months to see if my immune system has righted whatever was wrong. I can't wait.
    Anonymous 42789 Replies
    • October 7, 2007
    • 02:01 AM
    • 0
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  • Thanks for that, I will definitly discuss a few things that you have mentioned with my doctor. I have an appointment with my haematologist next week to see if anything new has come up in recent blood tests. I will also be seeing an Immunologist in the next few weeks. I have almost weaned off the Pred medication and should be off it in two weeks. However, I still must take 150mg of Azathioprine daily, (which is to replace the Prednisolone) or I will loose my vision. My doctor does not want me to stop taking the drug for fear of my immune sysem attacking my other optic nerve or any other organ in my body. They have suggested that I can slowly taper off this drug in about 12 months to see if my immune system has righted whatever was wrong. I can't wait. Sounds like you're getting good care. I hope it works out well for you.
    AgnosticJaz 23 Replies
    • October 7, 2007
    • 04:48 AM
    • 0
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  • Yes I am getting good help, however my vision is slowly getting worse again even while on the azathioprine. Back to Dr tomorrow to see what to do next. :(
    Anonymous 42789 Replies
    • October 25, 2007
    • 08:52 AM
    • 0
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  • Yes I am getting good help, however my vision is slowly getting worse again even while on the azathioprine. Back to Dr tomorrow to see what to do next. :( I'm sure your doctor will know that there are several other meds that can be tried. I don't know your exact diagnosis, but mine is cicatricial pemphigoid, also called mucous membrane pemphigoid, or just CP or MMP. It's an autoimmune disease that sometimes attacks the eyes. While researching the subject for myself a couple of months ago, I found a long article, "Cicatricial Pemphigoid," on emedicine.com, that includes the following statement: "Evidence from 2 small randomized controlled trials indicates that OCULAR CP responds best to cyclophosphamide, while mild-to-moderate disease seems effectively suppressed by treatment with dapsone." Just thought I'd send the quote in case you want to ask your doctor about those meds. Keep posting!
    AgnosticJaz 23 Replies
    • October 25, 2007
    • 11:53 PM
    • 0
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  • Many thanks, interesting comments you raised but nothing that fits my condition. I was back to the haematologist on Friday and then spent another two and a half hours with two new opthomologists as I am not responding to Azathioprine and have lost my vision again for the fifth time. They have put me back on Pred but is proving to be very slow this time. All the doctors I have seen are at a loss to explain why I keep losing my vision when I go off Pred. They say, quote, "If you get optic neuritis, you are treated with Pred and you get better. Why you are different and not responding we cannot explain". I am really getting frustrated with hearing the same line time after time. Thank you for your continued interest and help. It is much appreciated.
    Anonymous 42789 Replies
    • October 30, 2007
    • 06:06 AM
    • 0
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  • You need to find a major medical center that has ophthalmologists who specialize in autoimmune diseases, maybe Mayo Clinic or the Massachusetts Eye and Ear Infirmary in Boston, or possibly the U. of Cincinnati College of Medicine. There must be others, too. I haven't been to any of them, but those are three to consider. At least one of those ought to be able to help you. Good luck!
    AgnosticJaz 23 Replies
    • November 27, 2007
    • 01:56 AM
    • 0
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  • It is a month that I have got Optic Neuritis in my left eye. I am almost finished with my last pills and my vision is improving everyday. I did some research about the cause of autoimmune diseases and my findings are that nutrition plays a big role in this. I have adopted a natural diet avoiding sugar, coffee, tea, dairy, beef and pastry. I eat warm natured meat (Turkey and Lamb) and use warm natured fruit and vegetable like carrots, banana, cherry, pumpkin and squash. I eat lots of nuts, dates and coconut as snack. I got this diet from someone who had done years of research in the field of autoimmune diseases. I hope using this natural diet along with light regular exercise (avoiding overheating) helps you. Also there is another source to a healthy diet which is very similar to this one. you can find out more about that by reading this book: Super Foods RX (http://www.amazon.com/SuperFoods-Rx-Fourteen-Foods-Change/dp/0060535679). I have ordered this book myself and it is in the mail.
    Anonymous 42789 Replies Flag this Response
  • Five months ago I went to the optometrist suffering from blurred vision and severe pain in my left eye. He was very thourough in his check up and sent me straight to an opthamologist who diagnosed with me with Acute Optic Neuritis. My next port of call was the neurologist who put me on a course of oral Prednisolone and ordered an MRI to confirm or rule out M.S. This was ruled out as nothing unusual showed up. After 2 weeks of taking medication my vision returned to about 90% however, 8 medication free days later I started losing my vision again. This time I went totally blind in my left eye. Treatment: M.R.I. (clear again), 3 doses of I.V. Pred over 3 days followed by 2 weeks oral Pred. Vision then returned to about 80%. Once again after 8 medication free days my vision went again. Doctors kept treating me with oral Pred for 2 weeks. This was to happen a total of 4 times in 4 months. Every time I went off the Prednisolone, after 8 days I would lose my vision. My G.P ordered blood test, which showed up very high levels of anti-nuclear antibodies suggesting an autoimmune disease. The haematologist I am now seeing had not heard of O.N recurring so frequently nor had any of the opthamologists I have seen. Therefore because nothing definite showed up in my blood results they have put me in a unique box and can't tell me what I have. I am now being treated with the immuno-suppressant Azathioprine, (and suffering a few unwanted side effects). This is to suppress my immune system and to stop it from attacking my optic nerve. They can only treat the symptom (optic neuritis) because they don't know the cause. I am interested to know if anyone else has gone through this or any similar circumstances.Hello mon !I hope you are doing well!I've been suffering from similar ON attacks for over 2.5 years (since 2006). The overall pattern matches yours very closely: Steroid dependent ON going on and off, upon steroid withdrawal. No connection with any known disease. I've had 18 MRIs (yes, this is "eighteen") plus CSF tests..blah blah... all perfectly normal, and I'm still undiagnosed.I'm also on AZ + steroids, trying to retain a stable vision. My experience says: Never let your eye go completely blind !!! Unlike MS related ON, our case seems to require a different approach: treat it as soon as possible with the darn steroids. We seem to be a rare case but that's life afterall...Any developments from your side?
    elhiero 10 Replies Flag this Response
  • Thanks for that. My condition had been stable for the past 10 months taking 4mg Pred. However, I was exposed to chicken pox (which I'd had as a child and didn't get again either), but my vision started to go again. Doctors explaination was that my immune system was woken up in recognising the chicken pox virus and went into overdrive. My doctor put me straight back in the hosp with 3 doses of IV Pred over 3 days. This is episode number 6. I am now once again on the slow weaning process of Pred and the slow increase of Methotrexate. The methotrexate is being trialled to see if it will sustain my vision while coming off pred. this is certainly a long and draining process. you just never know what each will bring so i try to enjoy each one. I also wish you well and thankyou for your response. Hello mon ! I hope you are doing well! I've been suffering from similar ON attacks for over 2.5 years (since 2006). The overall pattern matches yours very closely: Steroid dependent ON going on and off, upon steroid withdrawal. No connection with any known disease. I've had 18 MRIs (yes, this is "eighteen") plus CSF tests..blah blah... all perfectly normal, and I'm still undiagnosed.I'm also on AZ + steroids, trying to retain a stable vision. My experience says: Never let your eye go completely blind !!! Unlike MS related ON, our case seems to require a different approach: treat it as soon as possible with the darn steroids. We seem to be a rare case but that's life afterall... Any developments from your side?
    Anonymous 42789 Replies
    • September 6, 2009
    • 00:25 AM
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  • Thanks for that. My condition had been stable for the past 10 months taking 4mg Pred. However, I was exposed to chicken pox (which I'd had as a child and didn't get again either), but my vision started to go again. Doctors explaination was that my immune system was woken up in recognising the chicken pox virus and went into overdrive. My doctor put me straight back in the hosp with 3 doses of IV Pred over 3 days. This is episode number 6. I am now once again on the slow weaning process of Pred and the slow increase of Methotrexate. The methotrexate is being trialled to see if it will sustain my vision while coming off pred. this is certainly a long and draining process. you just never know what each will bring so i try to enjoy each one. I also wish you well and thankyou for your response.Nice to hear Mon! Being stable for 10 months is good news!I may also switch to MTX, since Azathioprine seems to be of no considerable effect. My neurologist also suggests that a virus has driven my immune system crazy. We hope to tame the beast afterall... Uncertainty is the demon we have to fight first anyway.Is there any official diagnosis for your situation? Any connection with the CRION syndrome? This is supposed to describe our condition...All the best,G.
    elhiero 10 Replies
    • September 8, 2009
    • 10:24 AM
    • 0
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  • Might I kindly get an opinion from those reading this thread with this experience? I posted in the "eyes" sub forum, 25 reads, but no comments yet.I am currently suffering on my 4th day of a bout now diagnosed as optic neuritis. I am scheduled with a neuro-ophthalmologist this afternoon. I'm 23, caucasian, the only chronic health condition worth a mention is allergies. On Friday, I developed a haze, like a fog, in my right eye. Friday, I wasn't even sure if I was actually seeing it or not. Saturday rolled around, it was slightly worse, I then attributed it to a non-typical-for-me migraine aura. I get 1 migraine every 1 or 2 years - but severe enough to put me in bed for a day or two til the pain goes away.No migraine ever turned up.Sunday, vision worsened, I went to an optometrist to get my eye pressure checked and my retina checked. Optometrist couldn't find anything wrong.By Monday, I was, and continue to be almost completely blind in my right eye. The best I get out of it right now is the sensation of light or dark and some sensation of motion if you are towards my right peripheral vision, and there is one very small spot in my field of vision where I might be able to distinguish a fingernail held at arms length.I was adopted as an infant so have absolutely no helpful family history to give to anyone. I have had comings-and-goings of symptoms that haven't really lead my doctors anywhere. I'll have severe allergy flare ups (stuffy nose, watery eyes) and I will break out in hives for no known reason. The issue with the hives has been going on since I was in my early teens. No one has been able to find a specific trigger so chalked it up to stress. I also have bowel issues on occasion. One flare up in recent memory severe enough to warrant an emergency visit to my general physician, who seemed confused that I was not running any sort of fever. The last flare up serious enough to warrant a visit to the doctor was when I was 5-6 years old roughly, if my memory serves, I wasn't sick with anything bacterial/viral then either.ETA: I was recently diagnosed with osteoarthritis in my spine. I also posted a thread here some time ago regarding that issue. I only recently got medical insurance again so have not yet been to a rheumatologist for further testing.Do these threads weave into anything? Seriously any help anyone could give would be greatly appreciated.
    cazlee 10 Replies
    • September 8, 2009
    • 05:37 PM
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  • Might I kindly get an opinion from those reading this thread with this experience? I posted in the "eyes" sub forum, 25 reads, but no comments yet.I am currently suffering on my 4th day of a bout now diagnosed as optic neuritis. I am scheduled with a neuro-ophthalmologist this afternoon. I'm 23, caucasian, the only chronic health condition worth a mention is allergies. On Friday, I developed a haze, like a fog, in my right eye. Friday, I wasn't even sure if I was actually seeing it or not. Saturday rolled around, it was slightly worse, I then attributed it to a non-typical-for-me migraine aura. I get 1 migraine every 1 or 2 years - but severe enough to put me in bed for a day or two til the pain goes away.No migraine ever turned up.Sunday, vision worsened, I went to an optometrist to get my eye pressure checked and my retina checked. Optometrist couldn't find anything wrong.By Monday, I was, and continue to be almost completely blind in my right eye. The best I get out of it right now is the sensation of light or dark and some sensation of motion if you are towards my right peripheral vision, and there is one very small spot in my field of vision where I might be able to distinguish a fingernail held at arms length.I was adopted as an infant so have absolutely no helpful family history to give to anyone. I have had comings-and-goings of symptoms that haven't really lead my doctors anywhere. I'll have severe allergy flare ups (stuffy nose, watery eyes) and I will break out in hives for no known reason. The issue with the hives has been going on since I was in my early teens. No one has been able to find a specific trigger so chalked it up to stress. I also have bowel issues on occasion. One flare up in recent memory severe enough to warrant an emergency visit to my general physician, who seemed confused that I was not running any sort of fever. The last flare up serious enough to warrant a visit to the doctor was when I was 5-6 years old roughly, if my memory serves, I wasn't sick with anything bacterial/viral then either.ETA: I was recently diagnosed with osteoarthritis in my spine. I also posted a thread here some time ago regarding that issue. I only recently got medical insurance again so have not yet been to a rheumatologist for further testing.Do these threads weave into anything? Seriously any help anyone could give would be greatly appreciated.Hi Cazlee, I hope you get better very soon.I'm not a neurologist but have spent thousands of hours talking to my doctor and surfing on the net, so here are a few thoughts that could help:1. Optic neuritis is often accompanied by pain "behind" the eye, especially when moving your eye in a circular motion. It also involves problems with color perception. Any of these sound familiar? 2. Optic neuritis could be a symptom of certain autoimmune diseases (Rhemautoid Arthritis, Multiple Sclerosis, etc), BUT your age (too young) and the development of your symptoms (severe vision loss) suggest that it is something atypical, ie idiopathic. 3. Most probably you will have to go through a number of tests, including: MRI, lumbar puncture, and VEP (evoked potentials for the optic nerve). ***************** Don't freak out !!!*****************They are easy to perform and will provide you with critical info on your condition. The connection with your allergies should also be investigated. Moreover is it Osteo-arthritis? Could it be Rhheumatoid?Keep in mind that:1. Despite the connection between ON and MS or other autoimmune deseases, there are many other reasons that cause ON. There are also many undiagnosed / idiopathic ON cases. E.g, I am still undiagnosed after 3.5 years and several ON episodes as all my tests (including six triple MRI's, CSF test, etc) are negative. In now seems it is idiopathic ON and have to live with that, taking my regular medication in order to avoid flare ups.2. Your vision will return 100%. It might take more than 2 months, so be patient. In my case it takes something around 4 months to fully recover.3. Even in the unlike case of a serious autoimmune condition, your prognosis will be very good anyway.
    elhiero 10 Replies
    • September 10, 2009
    • 07:38 AM
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  • Nice to hear Mon! Being stable for 10 months is good news!I may also switch to MTX, since Azathioprine seems to be of no considerable effect. My neurologist also suggests that a virus has driven my immune system crazy. We hope to tame the beast afterall... Uncertainty is the demon we have to fight first anyway.Is there any official diagnosis for your situation? Any connection with the CRION syndrome? This is supposed to describe our condition...All the best,G.Hi,yes I have been seing a new neurologist for the last 2 months who mentioned CRION. He gave me some literature on it and yes it does describe this condition. I am getting on fine atm, however if I have another episode I am to have further teats at major centre with an opth-neurologist. Dont know what that will achieve but I'm willing to try anything. In relation to Azath, I could not continue taking it as my liver function results were in the danger zone and I suffered extreme nausea. The MTX, well I'm only on 7.5mg once a week and Pred 15mg daily so we don't know if the MTX will sustain my vision. It is such a slow process to reduce the Pred.I also have been told that it may have been a virus that started this but it is also possible that stress played a silent but dangerous part in it too.Best wishes to you, Mon.
    Anonymous 42789 Replies
    • September 11, 2009
    • 00:46 AM
    • 0
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  • Hi,yes I have been seing a new neurologist for the last 2 months who mentioned CRION. He gave me some literature on it and yes it does describe this condition. I am getting on fine atm, however if I have another episode I am to have further teats at major centre with an opth-neurologist. Dont know what that will achieve but I'm willing to try anything. In relation to Azath, I could not continue taking it as my liver function results were in the danger zone and I suffered extreme nausea. The MTX, well I'm only on 7.5mg once a week and Pred 15mg daily so we don't know if the MTX will sustain my vision. It is such a slow process to reduce the Pred.I also have been told that it may have been a virus that started this but it is also possible that stress played a silent but dangerous part in it too.Best wishes to you, Mon.Fine Mon, fine! It is good to know you are doing well.In general immunosupression is quite effective in the case of CRION. This is what my neurologist suggests. I am now arranging to see a specialist on CRION, located in London National Hospital. I will let you know asap if I have any interesting news or suggestions on this condition .I wish you the very best. Please keep me posted on any development from your side.Take care, George
    elhiero 10 Replies
    • September 12, 2009
    • 09:51 AM
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  • Fine Mon, fine! It is good to know you are doing well. In general immunosupression is quite effective in the case of CRION. This is what my neurologist suggests. I am now arranging to see a specialist on CRION, located in London National Hospital. I will let you know asap if I have any interesting news or suggestions on this condition . I wish you the very best. Please keep me posted on any development from your side. Take care, George Thankyou George.I am very keen to hear back with any news from this CRION specialist. London is a long way from Australia.Good luck!Mon
    Anonymous 42789 Replies
    • September 15, 2009
    • 01:59 AM
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  • Thankyou George.I am very keen to hear back with any news from this CRION specialist. London is a long way from Australia.Good luck!MonOh boy! Down Under!Trip 2 London will be scheduled for late '09 or early 2010. Inshallah!Will keep you posted on any developments following my visit. g.
    elhiero 10 Replies
    • September 16, 2009
    • 08:23 AM
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  • Hi, I am looking for any information anyone has on CRION. It must be a rare condition because there is hardly any information on it online (I found one article and a few case studies). I am wondering if I have this condition. Two months ago I developed optic neuritis and was given IV steroids, followed by an oral steroid taper dose. My symptoms resolved completely within a few days on steroids. However, everytime I try to taper my steroid dose below 10mg my symptoms return (and even switch eyes). And each time I increase my steroid dose my symptoms again resolve. The only thing I have that doesn't sound typical of CRION are some diffuse lesions in the white matter of my brain on MRI. My doctor initially diagnosed me with MS because of this (although I have had no other symptoms of MS). I then saw an MS specialist who said the MRI lesions were not necessarily MS (the lesions were not in the areas diagnostic of MS...he basically wants to watch them and repeat an MRI in a few months). Now all of the doctors I have seen agree that my optic neuritis is not typical of that seen in MS, which makes them question the MS diagnosis even further. However, none of them are actively looking for a cause. They are basically "watching and waiting". I even saw an neuropthalmologist who didn't really tell me anything because my symptoms had resolved by the time I got in to see her. So, my question is this...does anyone know if CRION can cause MRI abnormalities? How long does CRION last? Has anyone had a similar case or have any suggestions?
    Anonymous 42789 Replies
    • September 17, 2009
    • 00:59 AM
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  • Hi, I am looking for any information anyone has on CRION. It must be a rare condition because there is hardly any information on it online (I found one article and a few case studies). I am wondering if I have this condition. Two months ago I developed optic neuritis and was given IV steroids, followed by an oral steroid taper dose. My symptoms resolved completely within a few days on steroids. However, everytime I try to taper my steroid dose below 10mg my symptoms return (and even switch eyes). And each time I increase my steroid dose my symptoms again resolve. The only thing I have that doesn't sound typical of CRION are some diffuse lesions in the white matter of my brain on MRI. My doctor initially diagnosed me with MS because of this (although I have had no other symptoms of MS). I then saw an MS specialist who said the MRI lesions were not necessarily MS (the lesions were not in the areas diagnostic of MS...he basically wants to watch them and repeat an MRI in a few months). Now all of the doctors I have seen agree that my optic neuritis is not typical of that seen in MS, which makes them question the MS diagnosis even further. However, none of them are actively looking for a cause. They are basically "watching and waiting". I even saw an neuropthalmologist who didn't really tell me anything because my symptoms had resolved by the time I got in to see her. So, my question is this...does anyone know if CRION can cause MRI abnormalities? How long does CRION last? Has anyone had a similar case or have any suggestions?Hello rebwhitt !Obviously a steroid dependent Optic Neuritis is quite atypical to MS. As you may know CRION is a newly studied syndrome and information about it is hard to find.I really don't know if CRION causes MRI abnormalities. I think it might show some enhancement along the optic nerves. Moreover CRION could also be interpreted as "Chronic, Relapsing Inflamatory Optic Neuritis", and not Optic Neuropathy. In this case it invlolves demyelination and therefore MRI findings. In all cases check the key literature and consult an experienced neurologist, although they tend to focus too much on a possible MS and somehow neglect other atypical findings. If you are based in Europe, a visit at the NHNN, where CRION was first studied, could provide you with some answers.According to my doctor, CRION is not likely to go away easily; it's a chronic disease. Other doctors suggest that CRION could be self-limited and evenutally fall into remission, for ever! As a key advice, keep in mind: always treat ON attacks with steroids, never let them resolve by themselves! In case of CRION this will save your vision! Take good care and cheer up! Remember that visual symptoms could be a result of various autoimmune diseases (not necessarily MS) and numerous other conditions. In all cases they constitute a HIGHLY FAVORABLE PROGNOSTIC FACTOR!The "watching and waiting" strategy is very common in many neurological conditions. It's a stressful situation, especially for the patient, who lives in fear and insecurity. Try to maintain your courage and emotional focus. I know it's hard. I've been thtrough it for more than three years of frequent, steroid dependent, undiagnosed ON attacks. Learn how to live WITH this condition and not FOR this condition. Don't let it consume you. Take over and continue with your life; it is unique and beautiful ! I wish you the very best !Keep us posted on any development...
    elhiero 10 Replies
    • September 21, 2009
    • 11:07 AM
    • 0
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