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Should I look into the possibility of autoimmune issues?

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  • Should I look into the possibility of autoimmune issues?

    I always wonder why I have had such a terrible time with dry eyes since Lasik... maybe there isn't a reason... I mean, stuff just happens sometimes, right? But if there IS a reason, then I'd like to know what it is.

    So... I've been speculating about whether or not I might have some kind of autoimmune issue.... Mind you, even if I DO have some kind of autoimmune issue, maybe that wouldn't change anything the docs would do to treat me anyhow... so if that's the case, then why even go there, right? But I'm curious...

    I feel like I may sound like I'm grasping at straws here in looking for an explanation for my dry eye problems... but here goes anyhow.

    Weird stuff that's happened to me:

    Optic Neuritis when I was 18. They did an MRI on me, and found lesions in my brain. They told me that with an MRI result like that AND the acute attack of optic neuritis, I had an 80-90% chance of being diagnosed with multiple sclerosis in future. They couldn't call it MS then because it was only 1 attack, and you need 2 attacks of MS-like symptoms to get diagnosed with MS.

    I get ocular migraines from time to time. I don't get them often, maybe once every few months... I get them mostly when at work under florescent lighting.

    Strange pain radiating from my joints (in my knees mostly, sometimes ankles) ever since I was a kid. It happens maybe once or twice a month... more often when I'm stressed, I think. I've always been very physically active, so I know what normal discomfort from working out etc. feels like... but this is different. When it happens, it feels like the pain is coming from deep in my bones... it's really intense, and once it starts, the only way to stop it is to lie down and straighten my legs for a few hours. If I can't do that, then I have to take a combo of tylenol and advil... if it's really bad, then tylenol #1's. This strange pain is normally gone by the time I wake up the next morning.

    For as long as I can remember, a weird sensation on the skin of my forearms. This one is hard to describe... it's not a numbness, not a pain exactly, and the skin looks perfectly normal... but when it happens, touching the skin on my forearms feels very uncomfortable. This happens maybe once every couple of months... lasts a few hours to a day, and then goes away as mysteriously as it came...

    Just in the past few years, I feel like my mouth has been a little bit dry... Is it normal to not be able to go shopping without a water bottle? If I have my water with me, I'm fine... but if I leave without it, my mouth is super dry by the time I'm heading home... I've never given this much thought, because I always assumed that it was probably just the air-conditioning or dry heat in winter. It seems like such a silly thing to mention... I mean honestly, as IF this could possibly be anything noteworthy, right??

    A couple of years ago, the 2 toes beside my baby toe started getting some numbness.

    Of course, my immediate thought was "Oh crap!! Don't tell me this is the start of me having MS..."

    It was worse if I wore high heels... so I gave them up. Then, there was not only numbness, but stabbing pain with every step if I'd been walking a lot that day... it made me hobble along as if I was 90 years old or something! I saw my neurologist, and he immediately thought it might be MS... sent me for another MRI to check if the brain lesions had changed since I was 18. The results were good news: no changes in the brain lesions. I also consulted with a podiatrist, who suggested some orthotics, as my symptoms were consistent with Morton's Neuroma. The orthotics completely fixed the pain and numbness if I wore them daily. The podiatrist said if it was MS, the orthotics wouldn't have helped.

    I've never seen a doctor about any of this (except the optic neuritis and the numb toes) because on their own, these oddities didn't seem like a big deal... I can manage it, so I figured it would be pointless to see a doctor about it.

    Anyhow, just wondering if anyone has any thoughts on any of this. Am I a hypochondriac or what?? I feel kind of ridiculous even mentioning this stuff... I mean, everyone has weird stuff go on with their body from time to time, don't they?? But, I'm curious as to what you guys think...

  • #2
    Sjogren's can be pretty hard to diagnose, but I don't think you're grasping at straws. You're trying to make sense of your symptoms. The Sjogren's Foundation has the basic info--site is here. You've probably read these sites already.

    It would make sense to get some basic blood tests, if you haven't already, and maybe go see a Rheumatoligist. I had different symptoms than yours, but still found out I had Sjogren's----had the dry eyes though---definitely that. Other people I know who have Sjogren's all have a different set of symptoms than I do (or each other).

    It's not ridiculous to want to get some answers and some help. If there's a Sjogren's support group in your area, it can be a big help in finding out who the "good" doctors are (the ones that listen).

    Calli

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    • #3
      [QUOTE=SAAG;48941]

      "Just in the past few years, I feel like my mouth has been a little bit dry... Is it normal to not be able to go shopping without a water bottle? If I have my water with me, I'm fine... but if I leave without it, my mouth is super dry by the time I'm heading home... I've never given this much thought, because I always assumed that it was probably just the air-conditioning or dry heat in winter. It seems like such a silly thing to mention... I mean honestly, as IF this could possibly be anything noteworthy, right??"

      I do not think it is normal to need a bottle of water when you go shopping i do not need that . I do not think it is silly to mention it to your doctor.

      The Neurologist that you were seeing is he a specialist in MS ? I mean there are stroke specialists, epilepsy specialists, parkinsons specialists and so on. (Where i worked it is like that anyway) Maybe a specialist like that will not see you if it is not really bad i do not know...
      Last edited by sanna; 15-Jan-2010, 00:50.

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      • #4
        Thank you for your responses guys! It's good to know I'm not crazy for speculating about this stuff!

        As for my neurologist, I had no idea that they had sub-specialties... so I don't know what kind of neurological disorders he specializes in... he just happened to be the one I was referred to.

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        • #5
          SAAG, I agree with the others. My dry eyes started with Lasik 10 years ago and 3 years ago I was diagnosed with Sjogrens and Fibromyalgia. The dryness of lips/mouth didn't start until later. I had bad joints, muscle aches etc. No matter what I had, it kept coming back to dry eyes being the worst of my symptoms.

          It was me who knew I had Sjogrens and suggested my docs test me for it. Who would think that someone with Lasik dry/mangled eyes would be adding Sjogrens on top of that? It does happen though. I think you should look into it. There isn't a whole lot more they can do for your eyes, though, whether you have Sjs or not. They can treat you systemically for other complaints.
          Lucy
          Don't trust any refractive surgeon with YOUR eyes.

          The Dry Eye Queen

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          • #6
            @SAAG: When you had the optic neuritis, did the docs do a lumbar puncture? I had a optic neuritis 3 years ago and I was terrified by the thought of having MS. With a lumbar puncture there is a way to find out and it is the only method to tell whether it was due to MS or nit. My results were that the chance of this optic neuritis being due to MS was 2-3%. Of course this doesn't tell you that you cannot develop MS in the future but I was so happy to know that the optic neuritis was caused by something else (probably a virus)...

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            • #7
              Thanks Lucy and Steph for sharing your thoughts!

              I didn't get a lumbar puncture done... it wasn't offered... not sure what the pros and cons are of that vs. an MRI Maybe because my attack was 15 years ago the standard tests that they run would have been different?? I imagine my MRI was a lot more fun than getting a lumbar puncture would have been tho! heehee

              I wonder if any doc would let me try Salagen... I know there can be some nasty side effects, but if I were affected in that way, I could always quit, right? And maybe it would help... Yet another thing on my list of things to look into in the months to come... Autologous serum... DHEA drops... higher cyclosporine drop concentration... etc... the list goes on ...

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              • #8
                SAAG, sorry you're having all this trouble. Let me say, though, even if you have Sjogrens or other AI, there isn't anything "more" for dry eyes than you have available to you now. That sucks, but a diagnosis wouldn't help much with the eyes.

                For Salagen: I have Salagen and i don't like it, but do use it at times. It does NOTHING for my eyes. I have heard a few people mention it helped their eyes (some, a little, etc.).

                A lumbar puncture sure doesn't sound fun to me. I've had a multitude of MRI's done and the only bad thing is lying still. Grrrrrrrr. I've not had optic neuritis, but since Lasik 10 years ago have had trigeminal neuralgia in my left eye. I'm taking Lyrica for a year now and that helps it calm down. Lucy
                Don't trust any refractive surgeon with YOUR eyes.

                The Dry Eye Queen

                Comment


                • #9
                  Wow...we have so much in common...where do I begin?

                  1) My ophthalmologist told me "I don't know what's wrong with you, but you definitely sound 'autoimmuny' to me." As if autoimmuny is even a word! But borrowing his words, you sound autoimmuny to me, too! I agree with the person above that you should see a rheumatologist.

                  2) I agree with Lucy that there isn't much else you can do for your eyes. Try a higher dose of cyclosporine (Find my recent post on success with this).

                  3) Needing a bottle of water to run a short errand isn't normal. This is kind of like my realization that other people didn't sleep with bottles or glasses of water next to their bed every single night. It took me years to realize that wasn't normal!

                  4) Good luck finding a rheumatologist. I gave up after seeing two in a row who told me my symptoms were disproportionate with my signs, implying I'm crazy and choosing to ignore all the charts from my ophth and oral pathologist PROVING I had severe signs as well as choosing to ignore my path report indicating Sjogrens. But...like me...you're NOT CRAZY!

                  5) I love my pilocarpine (Salagen). It does not help my dry eyes at all. But it definitely helps my dry mouth. I have no side effects with the 5 mg dose. I have very mild, transient (lasting about 5 min) and tolerable side effects with the 7.5 mg dose (sweating, nausea). It is well worth the short-term discomfort for more saliva. Evoxac is another secretogogue you can try.

                  Good luck. AND YOU'RE NOT CRAZY!!!!!

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                  • #10
                    I kind of figured Salagen is more likely to help dry mouth than eyes... but was hoping maybe I'd be lucky and it would help MY eyes... haha /sigh

                    The lying still for so long while the MRI machine rattlles loudly all around is a bit of a drag... but for sure I'd rather have that than a lumbar puncture!

                    I've slept with a water bottle on my nightstand for years...

                    And yup, my ophthamologist gave the impression he doesn't know why my dry eye is so bad too- he said something along the lines of "Sometimes there just isn't a reason"... Personally, I think there is always a reason... it's really just a question of whether or not we KNOW the reason or not!

                    I'm going to check rateMDs.com for rheumy's in my area ... it's a cool site, and in my experiences with docs to date, the rating there are generally dead-on as long as a large enough number of people have submitted ratings... if a doc only has, say, 5 patients who have rated them, the rating is less likely to be accurate since it's too easy for one person to skew the averages.

                    WillWork4tears, I saw your post about your success with the higher cyclo. concentration... Ringo is another poster who had good results with higher strengths... so asking to try a higher strength is one of the first things I plan on asking my doc about... we have a compounding pharmacy here that makes cyclo. drops, so getting it made shouldn't be a problem.

                    And it's good to hear that I am not crazy!

                    This whole flare up is stressing me out more and more...errr... does it still count as a "flare-up" if it's going on 9 months now????...

                    Now that my mat leave is almost over, I need to be able to earn a living... my D.M. forgot to slot me back into a store so I've been scrambling to pick up
                    shifts... although I'd prefer 4 hr shifts for my eyes, I've ended up with my first shift back being 7 hours... that's 7 hours of work involving reading, a lot of concentration, lots of running around, and some computer work - and no goggles... I'm dreading it... I fear that once I return to work I'll be spending my days in between shifts recovering from the effects on my eyes... I know everyone here has dealt with these issues too, so it's not like I'm the only one... but man... this really really sucks

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