My story of iritis-2 weeks in

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mizzv
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My story of iritis-2 weeks in

Post by mizzv » Wed May 30, 2012 2:52 pm

It all started on Wednesday or Thursday (May 16, 2012) that my left eye looked a bit pink. This isn't a big deal for me because I wear contacts and once in awhile I will get dry eyes and a bit of pinkness. So, I removed my contacts, put on my trusty specs and went to work. While I was at work, I noticed that my eye had got a bit pinker. So, the next day, I put in Visine every 2 hours, didn't wear makeup and still wore my glasses. By Friday morning, I could barely open my eye because the sunlight was unbearable. My eyelid looked puffed up, I had tearing everytime I tried to open my eye a crack, and it was a bit sore to touch the eyelid. I managed to open my eye a bit to look: it was red, watery and sore where my top lid is. So, I went to my on-call health clinic and was seen by a general physician and 2 graduating med students who were doing a work placement with the physician. So, they ran my symptoms through a symptom checker on their laptop and said it looked like Conjunctivitis (pink eye). Well, before I go any further: I've had pink eye before, and this wasn't the same! To me, pink eye was a bit uncomfortable and made me wanna rub my eyes. This felt different. And I let them know that. They looked at it in a slit lamp, and took turns taking a peak. 2 out of 3 seen floaters. They also froze my eye to take the ocular pressure and it was 14 (normal range). They asked weird questions such as: Do you think you may have an STD? Do you have diarhhea? Do you have dry mouth? Do you take any medications? The answer: NO. They gave me a prescription for an anti-biotic gel to put in my eye. A quick trip to the drug store, and I put the gunk in my eye. I laid down to take a nap before my night shift and woke up with a dull pain in the back of my eye. The crease of my eyelid was extremely sore and puffed out. I had pain in my cheekbone, eye socket, eyebrow bone, and shooting pain across the fron tof my forehead. I attempted to try to stay at work, but once I got there and the supervisor seen me, he asked if I thought I could work. I said: NO. I went home and tried to sleep. But I couldn't. I went to the emergency department, and was seen 6 hours later. I described all the said syptoms to the emergency doctor and she said it sounded like "Iritis", but didn't feel comfortable making that kind of diagnosis without a consult from the opthamologist. 10 minutes later, the ophthamologist came in and told me to go with him to his office in the building. I did. He examined my eye and heard about my symptoms. He took a photo of the inside of my eye, field of vision test, ultrasound, ocular pressure test, and concluded that it was in fact acute iritis. He gave me Pred-forte (corti-steroids) drops to take every 4 hours and 4 times a day., and Aptomine (dilaters) to take 10 minutes apart from the first drops. I lost my vision, and if I had to describe it: it was like looking through wax paper. He seen me almost every other day, and after 4 appointments (8 days after I initially seen him) he seen no improvement, so he told me to take it every 2 waking hours. I did. The next day and 3 days more, I spent the days and nights in agaonizing pain. I would wake up in the middle of the night with sharp pain seering through my eyeball, and so much pressure in my forehead. The pain even went into my left side of my jaw, teeth, sinus, and cheekbone. It hurt so bad. I seen the doctor yesterday, and told him about the pain and how I went through 3 bottles of Tylenol is 4-5 days. He said it seems I may have had a relapse, he took more photos and field of vision and said the eye looked exactly the same as the first time he seen me (a week a half before). So, he prescribed me Dexamethesone (4mg) (steroid tablets). I have to take 10 in one sitting in the morning equalling 40mg for 10 days, then I will have to get weaned off. So, far I am on day 2 of the steroids and the redness has subsided and the pain is almost gone. I still see blurry, but I will be seeing the doctor every 2nd day.
I'm not sure what caused this, but to be safe I have an appointment with my family physican next week. I am not sure what tests I should ask her for. I am going to be asking for a medical certificate to be off work because my vision is still pretty bad, I have so many doctor appointments, and possibly medical tests? , and I'm not sure if I am out of the woods yet.
So, I would love to hear any other person's opinion on what tests I should ask for to know causes. My friend had the same experience and it turned out she had MS. My other symptoms this month was a very bad toothe ache that lasted a week, a huge sore (palm size )on the inside of my leg that filled with puss. I couldnt even walk. So....I'm not sure if its related, but maybe worth mentioning.

Mike Bartolatz
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Re: My story of iritis-2 weeks in

Post by Mike Bartolatz » Thu May 31, 2012 11:37 am

Boy I am sorry to learn of your terrible situation. what stands out is the problems with tissue surrounding your eyes as well as the facial pain. if there was swelling of tissue surrounding your eye, the first thing I would suspect would be a herpes viral infection. the herpes zoster virus can cause shingles which can get into the eye. the herpes zoster virus that causes cold sores can also cause major problems too. if you have a history of cold sores on your mouth or nose they can travel up a nerve and get into the eye. the herpes virus can also cause sores on the leg that are granulomatous. this impacts only one eye BTW.
the questions asked are those for all types of uveitis. your iritis is also known as anterior uveitis. if you have a lot of inflammation in the iris it can cause adhesion which can cause pain inside the eye from ciliary body spasm. the dilating drop is used to relax the muscle which is part of the ciliary body which opens and closes the eye. when there is a lot of adhesion, the outflow of fluid made in the ciliary body can build up causing increase of pressure (glaucoma).
it might also be that you have had iritis previously misdiagnosed as pink eye. then when an infection anywhere in your body occurs, the uveitis is once again triggered. if the sore on your leg was an infection and not a granuloma, then this could cause return of iritis.

if it is related to one of the viruses above, then an antiviral medication would be needed such as acyclovir taken for a long time to keep the virus in hibernation, the virus can cause problems with the optic nerve which might explain your vision loss as described if the virus got to the back of the eye it can cause a lot of damage.

as to tests, ask to be checked for the HLA B27 gene linked to iritis and forms of arthritis. MS is related to other genes and your friend might have been tested for the HLA DR15 and HLADR2 genes sometimes found in uveitis patients with MS.

other tests for Anti nuclear antibodies, ANA; ACE, RF factor, C reactive protein, SED rates etc could also be checked to see if there is inflammation systemically.

hopefully the oral steroids will stop this. make sure whatever you do, you follow tapering instructions to the T. oral steroid stop the body from producing them and if you cold turkey, you can become very ill.
a very slow taper off the steroid eyedrop needs to be done too.

get some 'fit over' sunglasses at the drug store and wear them in any lighting situation. they are polarized and will help stop the photophobia. also wear a hat to help shield your eyes while outside.

has the vision returned in the eye that had the white out? I have had them and they can be related to several things. they can be from optic neuritis but this isn't only related to MS. viruses mentioned above as well as other systemic disease and vascular disease can cause them. I have had these occur in both eyes at once or one eye at a time. when MS is present it is called uhthoff's symptom. in other conditions it can be related to sarcoidosis, Sarcoidosis and Sjogren's syndrome. all of these things have dry mouth along with the dry eyes and is why they asked about dry mouth. I personally have vascular disease and have experienced this related to Transcient Ischemic attacks, mini strokes.

I hope this helps,
mike
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mizzv
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Re: My story of iritis-2 weeks in

Post by mizzv » Fri Jun 01, 2012 6:02 pm

Thanks for the reply, Mike.
First off, I will update you on my last doctor appointment yesterday. My eye looked almost normal again, and by normal I mean white. But I did notice a couple stubborn little red veins handing around the iris (almost looks like a red ring). That area was also puckered out quite a bit. But the swelling in my eyelid was reduced and I was able to open my eye again. So, I had a little more bounce to my skip when walking into the Dr.'s office. He looked at it and said, "It's still not what I want to see.It looks better, but there is still a lot of inflammation." He did another photo and field of vision. Turns out there was still inflammation in the same areas but vision is still not better. He said to keep going with the steroid pills, drops and dilaters. I am glad to say I haven't had to use any Tylenol in the past couple days, too.
So, is this progress? I like to think so. But I'm not sure if I'm out of the woods yet. The doctor said my eye may be resistant to treatment or perhaps an underlying cause keeps forcing my immune system to attack my eye. Seems like its going to be a long road ahead to find out what's causing it.
Mike, thanks for your feedback. I haven't really had a problem with cold sores. I may have had like 3 in my life (maybe?). But I'm still not sure what caused my back teeth to ache like an infection a month back. I was sucking on Anbesol drenched Q-Tips for a week. And then it went away! It was like a day later when I got the huge pimple like thing on the side of my leg. I assumed it was an infected ingrown hair. It was seriously so big, I could barely walk. I popped it at home with peroxide and tweezers. What came out was white, milky puss and watery that literally squirted! Sorry to be graphic, but.....it was weird. Not sure if any of it is linked to iritis or possibly a fine example of when it rains, it really pours.
I do suffer from backache and kidney pain. My neck and shoulders get very stiff and sore, as well as my lower back. I've had that for years, but always contributed the pain to poor posture. In the past year or two, sometime when I have to pee...instead of my bladder feeling heavy, I get a heavy and sharp pain shooting through my back (bottom of ribs) and side of my stomache.
I go back to my opthamalogist Monday for another checkup. I go to my family physician on Wednesday. So, I think its a good idea to push for some tests in case the eye is in fact being attacked by something underlying. My eye doctor said that he really hates putting people on steroid pills. He said it doesn't always cure the problem overall, it just fixes it in the meantime. I still have hazy vision and the pain is almost gone. So, the steroids must be doing something, but I'm not sure if my iritis will relapse.

Mike Bartolatz
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Re: My story of iritis-2 weeks in

Post by Mike Bartolatz » Sat Jun 02, 2012 2:51 pm

if you have a history of urinary tract infections, then there is teh possibility of tuberointerstitial Nephritis and uveitis syndome, TINU that you could explore as a possibility. Kidney stuff is linked to several autoimmune diseases that also have uveitis associatied with them. you could get tested for sysemic Lupus eryhtematosus ANTI RO (SSA) ANTI LA (SSB) and smith antibody.
another thing that frequently has kidney involvement is Sarcoidosis (you don't need to be black to get sarcoidosis).

TINU is bilateral BTW If I recall correctly.

I hope the oral steroids work quickly just remember to taper off SLOWLY with them so that your body can start making steroids again. otherwise you can become very ill.

have they caused mood changes? inability to sleep?

take care,
mike
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mizzv
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Re: My story of iritis-2 weeks in

Post by mizzv » Mon Jun 04, 2012 2:44 pm

I went back to the doctor today, and told him about all my syptoms. When I mentioned kidneys, he said to taper off the steroids. He looked in my eye today, and did field of vision. He didn't comment on the progress except to say "Its looking better." But he is egyptian and said that even when my Iritis hit it highest peak. He did say however, "Your having headaches still, aren't you? And the severity hasn't lessened?" My answer was, "Yes, but the headaches come and go. Sometimes only lasting seconds like a sharp pain running through my forhead and behind my eyes." He looked concerned and said he has decided he wants me to go for an MRI. So, what kinds of things do they look for on the MRI? What exactly does the MRI show?
But my vision is still blurry, and weird as this may sound: I think there's periods where my sight is worse than others. Saturday, my vision seemed very blurry, Sunday it only seemed blurry i one spot. The last 2 or 3 days I have been very tired. No bouts of energy or sleepless nights. I've only been getting tired the past 3 or 4 days. And yes, the steroids did seem to cause mood changes. For example: the other day I needed to pick up like 3 things in Wal-Mart. I had so much anxiety and felt overwhelmed by 3 things. All the people in the store seemed to add to the anxiety. I ended up leaving the store empty handed because I was too stressed out. I imagine that is from the steroids. Also, that same day, I had a milkshake and had diarheah. I think the milk may have soured in my stomache. So, I try not to drink too much milk these past few days.

Mike Bartolatz
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Re: My story of iritis-2 weeks in

Post by Mike Bartolatz » Sat Jun 09, 2012 2:23 pm

you need to tell your doctor about the diarrhea, it could be triggered by a bacteria or a virus or to an autoimmune disease related to uveitis.
the HLA B27 gene also is related to Crohn's disease and ulcerative colitis. frequently the H Pylori bacteria is linked to iritis. in fact in one study by DNA sample of fluid taken from the anterior segment of the eye at time of cataract surgery, 40% of iritis patients with difficult to control iritis had this bacteria present which often causes GI complaints as well as Atherosclosis, heart problems and Now it is also linked to iritis and Glaucoma. the enteropathic arthropathies are triggered by stomach viruses and bacteria.

some things can have problems in the Central nervous system and can cause uveitis as well.
the first thing they look for is Multiple Sclerosis. they usually do an MRA which is an MRI with contrast dye to image lesions on the brain and to look at the Optic nerve for demyelinating disease.
other things can cause CNS and uveitis: sarcoidosis, Crohn's disease, lyme disease, Systemic Lupus Erythematosus, catscratch disease, whipples disease all cause problems. the herpes viruses can too as well as other pathogens.

hope this helps,
Mike
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mizzv
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Re: My story of iritis-2 weeks in

Post by mizzv » Sat Jun 09, 2012 4:06 pm

Thanks, Mike. I'm so happy to get informed. I will be sure to mention it. I've had milk since and I was fine. So, it turns out the milk wasn't upsetting my stomache. So, of course a new sypmtom would pop up over the weekend. Thankfully, I have an appointment Monday morning with my opthmalogist. But here it is: when I lay down and get up my eye "pulsates" like a heart. I can't see it in the mirror, but my bad eye is definetly pulsating.....for approx 5 minutes. My blurry vision seems to pulsate, too. For example: I looked at nail on the wall, and it moved to the beat of my pulse. My good eye doesn't do it. My redness returned last night, it is like a red ring around my iris and some red veins on top going towards the back of the eye. My eye is pulling when I look around (this is how it all started). No severe pain or photophobia or swollen eyelid yet. But my last bout started with red eye, pulling sensation (strain in the back of the eye) and dull achy pain in the crease of my eyelid. Ugh.....I haven't fully recovered from my last bout and it seems to be starting all over again. I predict I may be in for another terrible 2 weeks.
But on another note, I visited my family doctor (GP) and she says that if this continues, that she may wanna consult another opthmalogist for a second opinion. I guess that's okay, but I really like my opthmalogist now. But the GP says it sounds like it may not be Acute Iritis if my vision hasnt returned in a month and I'm having headaches. But geez....the symptoms are all there. I don't know if this could possibly be another misdiagnosis especially after I've had an ultrasound, photo, and frequent examinations with the slit lamp. But maybe these new symptoms could be one of the bad outcomes of the Iritis. So, I guess it will all show up on the MRI.

Mike Bartolatz
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Re: My story of iritis-2 weeks in

Post by Mike Bartolatz » Sat Jun 09, 2012 5:35 pm

the thing you are seeing is called 'vascular pulsation effect'. I get this too especially when i get up in the morning. then I don't notice it during the day. it is mostly in my lower peripheral vision. a Migrane with aura can produce a 'mirage like' effect. another thing people seem to see is like looking though 'fan blades' in the morning which is probably vascular pulsation effect.

it wouldn't hurt to get a second opinion but I suggest you go to a REAL EXPERT rather than just another ophthalmologist, an Ocular immunologist. a list of them can be found at http://www.uveitis.org in the Patient information section of the site.

take care,
mike
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mizzv
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Re: My story of iritis-2 weeks in

Post by mizzv » Mon Jun 11, 2012 12:33 pm

Went to the doctor today with a flared up eye. Its red and ugly again. Its a bit sore and tender, but the severe pain hasn't emerged yet. I told the doctor about my pulsating eye and the way he explained it to me is that it is like when you cut your finger and it pulsates because all the blood is rushing to a painful, exposed area. He said if it wasn't in sync with my pulse or pain occured in rythm to the pulsating eye, then it would be a totally different story. Not sure what that means. So, if anyone out there has that....possibly let your doctor know? But I got my papers for the MRI and I read what he is looking for: Sinutitis, Pseudo tumours, tumours on optic disc and some other scribbles I couldn't make out. Also, there was section for patients conditions and he put: head pain, eye pain, and swollen optic disc. Ummm.....he left out IRITIS. So, I guess I'm wondering if he still thinks I have Iritis or if I have a complication from Iritis or something new altogether. Also, the area he wants to have scanned are brain, eye, and spine. I go back in 2 days for monitering. But he upped my dosage of steroid pills: 50 mg of Dexamethasone, new steroid srops: Dexamethasone every 2 hours, and Atropine every 4 hours. He said he had to up my dose because my immune system could be overactive and need more steroids to supress it. But he forecasts that I will have to stay on the Steroids for longer and a very, very gentle and slow tapering. We tried to taper down to 35mg from 40mg last week, and 5 days later my eye turned red again. So, not sure what to make of this news today. The pharmacist filled my prescription and said it looks like the doctor is pulling at straws now on how to treat. So, it looks like I have a long road ahead. We are a month later, and I still have very blurry vision. The last words he left me with today are:" I'm not very happy. Are you?" Of course I'm not. I'm kinda scared of what they will find on the MRI or if they don't find a thing.....I know that sounds weird. But I guess if they don't find anything, we are back to the drawing board and to anyone out there that reads this and is new to Iritis: there are many things that cause it that it can be difficult to pinpoint it. And a scary fact is that the underlying cause may go undetected. So, hopefully I will find out this week when my MRI is. In my town, the waiting period is 3 months, but I also must add I have Ugent written on my MRI, so hopefully that speeds it up. And as far as treatment, I guess I will have to keep going with the steroids (oral and drops), wear sunglasses, and keep taking tylenol for head pain. But not sure there's much more I can do but wait for the tests.

Mike Bartolatz
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Re: My story of iritis-2 weeks in

Post by Mike Bartolatz » Tue Jun 12, 2012 11:23 am

the MRI wouldn't show Iritis but it can show problems behind the eye especially if it is an MRA, an Magnetic Resonance angiogram (MRI WITH CONTRAST DYE).. if optic disc swelling is present he is looking for causes of this which also have Uveitis present.
autoimmune disease that impact the optic nerve are looked for. if the optic nerve shows demylination, then the doctor can look for disease that causes this. lesions on the brain will also be looked for as well as the spine.
things that can be linked are Systemic Lupus erythematosus, Sjogren's syndrome, sarcoidosis, multiple sclerosis, herpes viral uveitis. epstein barr virus, catscratch disease, lyme disease etc.
do you get cold sores on your mouth or nose? have you been tested for thyroid disease? have you been tested for the HLA B27 gene?

the doctor isn't grasping at straws. he is trying to figure out what is causing this. the pharmacists is out of line making a statement like that.
you sound like you have a caring doctor trying to preseve your vision. you are lucky to have a doctor that cares but he may be over his head with this. can you get him to refer you to an Ocular Immunologist for input?

Wish you the best,
mike
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mizzv
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Re: My story of iritis-2 weeks in

Post by mizzv » Tue Jun 12, 2012 4:50 pm

Hello, Mike. Thanks for your info. Now that you mention it: I'm not sure if its cold sores on the nose. I do suffer from mild acne on the chin and around the mouth, and more recently on my jaw line (which I cannot get rid of)....usually this happens before and during menstruation. So, for safety's sake, let's call it hormonal type acne. Last week, I did get a big pimple like bump towards the tip of my nose and on the side of the bridge of my nose. I put a warm compress on them and popped them (bad habit I know). Lots of pus and blood came out and a week later Theey are still there almost like open sores. I figured it was because I popped. But I'm not sure if its a cold sore because I'm not really sure because I've never really had one except for in my mouth, and those could have been canker sores in the mouth. I haven't gone for any blood work as of yet. The MRI called me today and I will be going in in 2 days. The waiting list at my hospital is 3-4 months....so 2 days is very good in terms of them trying to get to the bottom of it. Yeah, I kind of that the pharmacist may have been out of line in the sense that she isnt familiar with my condition. Which I also want to add that I have gotten a lot of that: people seem to think I just have a eye infection. I took time off work because I cannot do my job as a security guard with only one good eye and pain I have. My boss wanted an exact date I could return...well....my opthamologist and GP have both said that there is now way they can predict a date that I will be okay to return to work because even after I seem better and am safe to taper off the meds....I still have to be monitered for continuing progress or chance of another relapse. I will see my GP on Friday possibly. I had to change some appts around because of the MRI. But we are going to discuss other consults. I will ask her for a referral to an ocular immunologist. I don't think we have one in our town, and may get sent to the city 3 hours away. But I will have to do what I can. I'll let ya know how the MRI goes.
Thanks, Mike.

mizzv
Posts: 19
Joined: Wed May 30, 2012 11:49 am

Re: My story of iritis-2 weeks in

Post by mizzv » Thu Jun 14, 2012 10:58 am

Okay, so I have good news! The MRI results came in to my doctor 20 minutes later, and my doctor called and left a message and said the brain looked normal. So, Next week gonna have to go for blood work. I seen the opthmologist yesterday and he showed me a picture of my pupil and it showed goldish brown and white flecks inside. Almost looked like a startburst pattern. He said that was the inflammation. And I seen the photo of the whole eyeball and I seen the white splotches near the optic nerve and retina. He said thats why I can't see because of the inflammation. So, tumour free and brain looks normal. I'll keep you updated.

Mike Bartolatz
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Re: My story of iritis-2 weeks in

Post by Mike Bartolatz » Thu Jun 14, 2012 11:18 am

hopefully it is just acne on your nose but the open sore makes me wonder if it could be related to sarcoidosis. usually there is lung invovlement with sarcoidosis but not always as there are subtypes of it where uveitis is the primary symptom. the Ocular immunologist should be able to help with possible diagnosis.
where do you live so I can suggest the BEST ocular immunologist near you for a consultation. they are usually located at university medical schools but all are NOT created equal if you know what I mean.

there are pathogens that can be involved as well as autoimmune conditions. experience is EVERYTHING with this type of thing. with sarcoidosis the bacteria that causes Acne, P acnes, seems to be a trigger and it can get into the eye and gut causing problems.
there are many other things possible as well. sometimes a biopsy of fluid from inside the eye is taken to do DNA testing on.\
molds can also cause problems especially in the Pacific northwest of the USA. cryptococcus is one that is overlooked by many doctors for example. in the southwest of the USA, the mold that causes Valley fever is another.
in the central USA and southwest, Presumed Ocular Histoplasmosis syndrome is another.

wishing you quiet eyes,
Mike
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mizzv
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Re: My story of iritis-2 weeks in

Post by mizzv » Thu Jun 14, 2012 7:31 pm

Wow, you are full of knowledge. I live in Nova Scotia, Canada. Mike, just a question for ya...I'm not sure how much you know about Steroid tablets, but I am on Dexamethasone 50mg and anyhow not sure if this is a side effect of that or maybe I'm just coming down with a little cold, but yesterday my throat was a bit sore and raw and then it became a bit hard to swallow. I drank lots of cold water and managed to get a full night sleep and woke up fine. But the night before I was up all night because of the steroids. I was very fatigued but had doctor appointments and such. So, maybe fatigue could do it as well. Is there anything you can suggest for side effects of steroids. Mine aren't anything major, I had some moody spells, increased hunger and thirst, restless muscles and finding it a bit hard to sleep.
Also, could you recommend a good relief for headaches while I'm on the steroids? I am not sure if I should take Tylenol. Couple nights ago I had such a horrible headache in my scalp and was just wondering if its safe to still take Motrin or Tylenol. Don't wanna rot out my stomache or anything. Thanks.

Mike Bartolatz
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Re: My story of iritis-2 weeks in

Post by Mike Bartolatz » Fri Jun 15, 2012 10:54 am

Call your doctor regarding what to take for headaches. the headache associated with uveitis is usually brow pain or pain in the temple area but this can be linked to some vascular diseases associated with autoimmune conditions. Scalp pain is significant as it is sometimes related to an autoimmine disease but I can't remember which one offhand. Viruses can cause inflammation of the CNS and this could explain things too so You have to get specialists involved to figure out what might be the cause of this. the herpes viruses can cause some of these symptoms systemically if present as well as other pathogens. Lyme disease is another pathogen that causes some of your symptoms.

steroids hype you up, cause mood changes, and you get the munchies with them. they also downregulate the immune system so colds and flu etc are much easier to get. difficulty swallowing is of concern and it can be a symptom of allergic reaction so tell this to the doctor. he may want to do a regional steroid injection rather than the oral steroids. but, make sure you taper off steroids SLOWLY as oral steroids shut down the body's production of them and it takes time to get the gland secreting them again. if you go off cold turkey you can have a major event that is life threatening. often swelling of the face occurs and the body too with water retention on oral steroids.

Dr Deschenes in Montreal at McGill University is the closest uveitis expert in Canada to you.
his contact information can be found at http://www.uveitis.org in the patient information section of the site.

the steroids can also increase pressure inside the eye. so get in for a check of pressure if symptoms continue to increase especially if vomitting occurs, dizzyness etc or halo's around lights appear. rarely is there pain associated with glaucoma but it can occur.
Mike Bartolatz
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