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Chronic Eye Pain & MRI Results
Good Evening
Originally I posted my query in the neurology section, however I was told to repost here, so here I am, now my 2nd post so please be gentle!
Background - I have been a chronic iritis sufferer for around 7 years, by which I take Vexol drops every day to control my iritis (4 x day each eye). This has been tough but on the whole I have lead a normal life with about 1 or 2 flares each year. All well so far....
Until August 2008. I started to get strong, sharp pulling and stabbing pains in my right eye. Along also came twitching and headache type pain which was present and sometimes not present along the temple of my right forehead and particularly the worst at the centre of my eyebrow. Even touching my brow and area around it was causing me pain and I didnt even like anything being near it. Then during work I was unable to look at the computer screne and with it came very strong pain. I tried changing the settings, ordered a screen protector etc. to no avail. The pain worsened and thus started a 7 month to and fro to my usual consultant at the eye infirmary. Several of these visits not only included planned appointments but many spent sitting waiting in casualty in the worst agony and in tears in the hope that someone could help.
At first they thought it was iritis (I knew it was something else) then after doing several blood tests they discovered I had an underactive thyroid gland. Treatment started for that and as a result they thought i might have thyroid eye disease or scleritis due to the level of pain. I was off work from August til the beginning of October and unfortunately myself and all my colleagues were made redundant to boot (not due to illness i might add).
After having more blood tests (the usual arhtirits, etc) I saw 3 more consultants at the infirmary just to be sure. Along with that I had 2 ultrasound scans (B Scans) on my eyes, optic nerve tests and retinal tests and an MRI (for which I was admitted to hospital to reduce the waiting time!). All the while they could see nothing except some inflammation in the jelly of my right eye and also a small cyst which sometimes would stay white and I would have blood vessels going around it in a circle all red. The cyst itself was of no concern to the eye infirmary however. I also developed Pars Planitis in the left eye all which they attributed to my iritis. There is also a burning sensation, again which is sometimes present and sometimes not. I would say I have about 1 or 2 days a week which are really on the level 10 of pain, which means I am unable to look for work, as I am not able to do anything when the pain is this bad.
The chronic pain I am having comes and goes with a really bad day resulting in chronic pain on a scale of 1 - 10 (10 being the worst) it would be a 10 for about 2 days with very strong photosenstivity. I refrained from using a PC, bright lights and TV for around 2 month. The photosenstivity got somewhat better over the next few months to what it is now. In that I can use a computer for a few hours but not able to sit at one all day (as with my previous admin job). I also turn down the brightness etc on both the PC and the TV. The pain however comes in cycles and it tends to worsen around my menstrual bleed. But I am not sure exactly as I have not kept a diary, wishI had but it appears that way.
The eye infirmary have now come to the conclusion that whatever is causing my pain is not due to my iritis or from my eye. Which in some ways is good in that I now dont have to worry that I will lose my sight. Mind, when the pain is at its worst, I want someone to take my eye out! They sent me like I said earlier, for an MRI and have now handed my problem over to a Neurologist (Appointment due on 21st April), and a Pain Management Clinic.
The Pain Management clinic started me on Nortriptyline (which I have just started taking after Gabapentin (max dose) was no use at all). I have also been given Tramadol which I take when it is raging, but wont take all the time as I see it would lose its potency anyway after a time.
In the meantime I received a copy of a letter from the Pain Clinic to my GP and the Neurologist, and it says some medical stuff which I don't understand. I thought it would be good if someone could give me more perspective on what it says in layman's terms prior to my visit to the Neurologist.
As well as this, any tips to cope with the pain in the meantime or any help at all, would be gratefully welcome!
Anyway, here is the section of text in the letter which I don't understand. The letter is just letting my GP and the Neurologist know what pain relief has been given prior to the neurologist's review.....
".........She (me) has been thoroughly investigated including an MRI scan of her orbits and her brain which was suggestive of "there are quite a few small hyperintense foci in the white matter of both cerebral hemispheres some in the periventricular and more in the deeper location seen on T2 weighed scan. The appearances are suspicious of demylinating and perhaps partially established change."
Other than this problem, iritis and the newly diagnosed hypothyroidism, I am in good health, overweight - yes, but don't smoke, drink very little and not at all due to meds. No children and desperate to return to working life so I can feel I have a purpose at last. After 7 months of tests all to no avail, and having to start all over again, with many painful days and lack of sleep to but, it has to be said, it is soul destroying,
Any advice or feedback would be welcomed.
Thank you in advance.
Maria
Washington UK
Originally I posted my query in the neurology section, however I was told to repost here, so here I am, now my 2nd post so please be gentle!
Background - I have been a chronic iritis sufferer for around 7 years, by which I take Vexol drops every day to control my iritis (4 x day each eye). This has been tough but on the whole I have lead a normal life with about 1 or 2 flares each year. All well so far....
Until August 2008. I started to get strong, sharp pulling and stabbing pains in my right eye. Along also came twitching and headache type pain which was present and sometimes not present along the temple of my right forehead and particularly the worst at the centre of my eyebrow. Even touching my brow and area around it was causing me pain and I didnt even like anything being near it. Then during work I was unable to look at the computer screne and with it came very strong pain. I tried changing the settings, ordered a screen protector etc. to no avail. The pain worsened and thus started a 7 month to and fro to my usual consultant at the eye infirmary. Several of these visits not only included planned appointments but many spent sitting waiting in casualty in the worst agony and in tears in the hope that someone could help.
At first they thought it was iritis (I knew it was something else) then after doing several blood tests they discovered I had an underactive thyroid gland. Treatment started for that and as a result they thought i might have thyroid eye disease or scleritis due to the level of pain. I was off work from August til the beginning of October and unfortunately myself and all my colleagues were made redundant to boot (not due to illness i might add).
After having more blood tests (the usual arhtirits, etc) I saw 3 more consultants at the infirmary just to be sure. Along with that I had 2 ultrasound scans (B Scans) on my eyes, optic nerve tests and retinal tests and an MRI (for which I was admitted to hospital to reduce the waiting time!). All the while they could see nothing except some inflammation in the jelly of my right eye and also a small cyst which sometimes would stay white and I would have blood vessels going around it in a circle all red. The cyst itself was of no concern to the eye infirmary however. I also developed Pars Planitis in the left eye all which they attributed to my iritis. There is also a burning sensation, again which is sometimes present and sometimes not. I would say I have about 1 or 2 days a week which are really on the level 10 of pain, which means I am unable to look for work, as I am not able to do anything when the pain is this bad.
The chronic pain I am having comes and goes with a really bad day resulting in chronic pain on a scale of 1 - 10 (10 being the worst) it would be a 10 for about 2 days with very strong photosenstivity. I refrained from using a PC, bright lights and TV for around 2 month. The photosenstivity got somewhat better over the next few months to what it is now. In that I can use a computer for a few hours but not able to sit at one all day (as with my previous admin job). I also turn down the brightness etc on both the PC and the TV. The pain however comes in cycles and it tends to worsen around my menstrual bleed. But I am not sure exactly as I have not kept a diary, wishI had but it appears that way.
The eye infirmary have now come to the conclusion that whatever is causing my pain is not due to my iritis or from my eye. Which in some ways is good in that I now dont have to worry that I will lose my sight. Mind, when the pain is at its worst, I want someone to take my eye out! They sent me like I said earlier, for an MRI and have now handed my problem over to a Neurologist (Appointment due on 21st April), and a Pain Management Clinic.
The Pain Management clinic started me on Nortriptyline (which I have just started taking after Gabapentin (max dose) was no use at all). I have also been given Tramadol which I take when it is raging, but wont take all the time as I see it would lose its potency anyway after a time.
In the meantime I received a copy of a letter from the Pain Clinic to my GP and the Neurologist, and it says some medical stuff which I don't understand. I thought it would be good if someone could give me more perspective on what it says in layman's terms prior to my visit to the Neurologist.
As well as this, any tips to cope with the pain in the meantime or any help at all, would be gratefully welcome!
Anyway, here is the section of text in the letter which I don't understand. The letter is just letting my GP and the Neurologist know what pain relief has been given prior to the neurologist's review.....
".........She (me) has been thoroughly investigated including an MRI scan of her orbits and her brain which was suggestive of "there are quite a few small hyperintense foci in the white matter of both cerebral hemispheres some in the periventricular and more in the deeper location seen on T2 weighed scan. The appearances are suspicious of demylinating and perhaps partially established change."
Other than this problem, iritis and the newly diagnosed hypothyroidism, I am in good health, overweight - yes, but don't smoke, drink very little and not at all due to meds. No children and desperate to return to working life so I can feel I have a purpose at last. After 7 months of tests all to no avail, and having to start all over again, with many painful days and lack of sleep to but, it has to be said, it is soul destroying,
Any advice or feedback would be welcomed.
Thank you in advance.
Maria
Washington UK
There are simply too many things that the white areas could mean for a laymen like me to even try to say. We are not doctors and cannot diagnose you.
I would try the med, and see if it works - at least they are giving you a dose to work up to so that if you can take less, you can. Read up on the side effects. There is no predicting if a med will or will not work for a particular person. Even a med that my mom says does not work for her, works fine for me. You have to try in unless there is a known allergy to a part of it.
Good luck.
I would try the med, and see if it works - at least they are giving you a dose to work up to so that if you can take less, you can. Read up on the side effects. There is no predicting if a med will or will not work for a particular person. Even a med that my mom says does not work for her, works fine for me. You have to try in unless there is a known allergy to a part of it.
Good luck.
Hi
Thank you for your reply.
I have already been tested for the usual rheumatological probs and it has all came back I'm ok on that score. I've also had 3 top opthalmagists say that what ever this is, is not due to my iritis or anything to do with my eye.
The neurologist appointment is due on 21st April, so I should get some answers but thought someone would tell me in English what the report means so I'm a bit more prepared.
I'd also like to know if Nortriptyline is any good for helping with the severe pain Im having because of this undiagnosed thing. I have been told to start on 10mg a day increasing to what works, with a maximum dose of 100mg a day.
I will let you know what happens re the neurologist and over here in the UK we don't get to see endocrinologists, the NHS service is well, in a nutshell, ****!
I can say however, that my thyroid levels are now balanced too.
Look forward to your replies.
M
Thank you for your reply.
I have already been tested for the usual rheumatological probs and it has all came back I'm ok on that score. I've also had 3 top opthalmagists say that what ever this is, is not due to my iritis or anything to do with my eye.
The neurologist appointment is due on 21st April, so I should get some answers but thought someone would tell me in English what the report means so I'm a bit more prepared.
I'd also like to know if Nortriptyline is any good for helping with the severe pain Im having because of this undiagnosed thing. I have been told to start on 10mg a day increasing to what works, with a maximum dose of 100mg a day.
I will let you know what happens re the neurologist and over here in the UK we don't get to see endocrinologists, the NHS service is well, in a nutshell, ****!
I can say however, that my thyroid levels are now balanced too.
Look forward to your replies.
M
I would suggest you seek out, and soon, an endocrinologist as well a rheumatologist. They should be able to assist you in running more detailed blood tests to find out what more is going on and if there is an auto-immune issue and if there is more endocrine issues going on. Iritis is usually indicative of other problems - in other words, it signals that there is another problem and so you should get more testing.
Did the neurologist give you a diagnosis?
Did the neurologist give you a diagnosis?
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