ophelialit Posted January 31, 2013 Report Share Posted January 31, 2013 Hi, all...If anyone has been following my posts from the past couple days, you know I've been dealing with blurry vision on/off for the past week-ish. I, like so many of us here, blew it off at first and assumed it was caused by low BP or meds or TMJ or just a wacky system glitch. I didn't even consider going to the doc until I became concerned that it might be optic neuritis--a hallmark of MS. Even then, I didn't do anything about it and just assumed it would wane after a while like so many of our symptoms seem to do. I woke up yesterday to what I thought was a room full of smoke--turns out, my vision had gotten much, much worse overnight. I FINALLY hightailed it to my ophthalmologist and was diagnosed with bilateral uveitis.I was yammering to the doc the whole time about "I'm sure it's nothing--I'm really paranoid, etc., etc." because I'm so used to doctors shrugging their shoulders and finding nothing conclusive. He finally stopped me and said "This is serious. Left untreated, this causes PERMANENT blindness. This is NOT nothing. It's definitely something. It's good that you came in." That was a HUUUUGE wake-up call for me--I blow things off all the time because I figure they're just dysautonomia shenanigans--guess what? Sometimes, something just ain't right! I came home and was all spooked from the day and burst into tears while telling my husband...he just kept patting my back and saying, "I'm confused....why are you crying? You're crying because you're NOT going to go blind?" It's just too hard to describe how often I feel resigned to feeling awful--so resigned that I ignore something potentially serious...Just a reminder--we have to stay on top of everything all the time...I'm happy my peepers were spared this time... Quote Link to comment Share on other sites More sharing options...
corina Posted January 31, 2013 Report Share Posted January 31, 2013 Thanks for the reminder ophelialit, you are SO right. I think this is something we all do and I agree it can be quite dangerous! Quote Link to comment Share on other sites More sharing options...
misstraci Posted January 31, 2013 Report Share Posted January 31, 2013 Glad you went and they checked you and gave you an answer! So what exactly do you have and what caused it? And what's he doing as treatment. I try to always go with my gut instincts Glad your peepers were spared! Quote Link to comment Share on other sites More sharing options...
ophelialit Posted January 31, 2013 Author Report Share Posted January 31, 2013 I've got anterior uveitis--which basically means that the arteries in both eyes are highly inflamed; it's an odd little disorder that's seen quite frequently in MCAS patients, actually. It's also related to other autoimmune conditions like ankylosing spondilitis--so, yay for me, I'll be headed to a rheumatologist next week to be tested to for the HLA-B27...thing....antibody? Gene? I can't remember right this second. Anyway, it's also connected to Hashimoto's Thyroiditis which I have as well, but for which I don't take meds because my TSH, T4 and T3 levels have always been normal. I'm on 4 doses of PredForte (prednisone drops) until I see the doc again next week, so we'll see how it goes... (See? Get it? Good pun! OK, not really )Sooooo, I'm trying to look at this event as yet another piece of my overall puzzle instead of the enormous pain in the bum that it really is... Quote Link to comment Share on other sites More sharing options...
arizona girl Posted January 31, 2013 Report Share Posted January 31, 2013 So glad you went in. I hope it recovers and there are no lasting effects.When I saw Dr. Grubb, he said something similar to me. Something like, "patients get fixated on pots and attribute everything to it, this concerns me as I fear they will overlook a serious illness like cancer.Many things can cause pots and everything that is wrong with us is not just pots, pots is usually being caused by a secondary issue. If it hadn't been for grubb and two other doctors telling me I needed to figure out what was wrong, I probably wouldn't know what I actually have and wouldn't be getting the much needed treatments I'm now getting. Quote Link to comment Share on other sites More sharing options...
Zap Posted January 31, 2013 Report Share Posted January 31, 2013 So glad you went in. I hope it recovers and there are no lasting effects.When I saw Dr. Grubb, he said something similar to me. Something like, "patients get fixated on pots and attribute everything to it, this concerns me as I fear they will overlook a serious illness like cancer.Many things can cause pots and everything that is wrong with us is not just pots, pots is usually being caused by a secondary issue. If it hadn't been for grubb and two other doctors telling me I needed to figure out what was wrong, I probably wouldn't know what I actually have and wouldn't be getting the much needed treatments I'm now getting.I will second this - for some time I figured that I should just accept the diagnosis of dysautonomia and feel the relief of using it to blame for my problems. I just recently had an appointment with a new neurologist who has worked at a lot of the big places, and is incredibly on top of it all. During our discussion, she mentioned things that other doctors never told me before, maybe due to ignorance I don't really know.But she did say, that I appear to have small fiber neuropathy - but that what really matters is not confirming that, per se, but finding out WHY I have it. She said that my autonomic tests, which were done in late 2011, seem to indicate mild dysautonomia - but that my symptoms are anything BUT mild. Obviously, we know that often dysautonomia is secondary to something else - but it is critical to find out the cause, because it could be much more serious or be causing/ most of the symptoms.So we have started another journey of attempting to turn over stones to see if there is anything underneath - and find out the WHY. That is the only way to really achieve proper treatment - and now I feel I've been running in circles until recently, because I was doing most of stone flipping (or twisting regular doctors' arms to check things for me). I was re-assured when we went over my two binders of test results, and she mentioned that I've done a LOT of legwork - we really are our best advocates, and we can't forget that! Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 31, 2013 Report Share Posted January 31, 2013 Thanks for the reminder. I, too, just assume that between the POTS, mcas, and eds, that every symptom fits into one of them and doesn't need to be addressed. But, your experience is a good reminder of why that is just not so. And, even if it is caused/linked to one of these syndromes, that doesn't mean it's not dangerous if left unchecked. Quote Link to comment Share on other sites More sharing options...
Chaos Posted February 1, 2013 Report Share Posted February 1, 2013 Glad you caught it in time. Definitely not something to mess around with. One of my sons had that a couple years ago and found he was HLA B27 positive. Then another son tested positive and had a severe onset of inflammatory arthritits/anklylosing spondylitis. Third son and I also tested postive. Nothing like feeling really responsible for passing on a load of bad genes. Husband of course can feel smug on this one as he and my daughter both test negative.You're right too about us having the tendency to blow everything off as being part of POTS. However, when you get dismissed as being a psych case as often as we do when we DO go in with our symptoms, it's not hard to understand why it happens. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted February 1, 2013 Report Share Posted February 1, 2013 Oh. my. God. - I cannot believe you posted this today. I had a few episodes over the summer of seeing smoke that wasn't there. It has become more and more frequent since then, almost daily now. I figured it's just one of many weird symptoms and there's no point in going to the Doctor because they never find anything. I just said to my husband last night maybe I should see an eye Dr. about this. Thanks so much for this post - I will be making that appointment! Quote Link to comment Share on other sites More sharing options...
ophelialit Posted February 1, 2013 Author Report Share Posted February 1, 2013 Chaos--Funny that you should mention the HLA-B27...I'm off to the rheumatologist next week to be tested for that very thing. It won't suprise me an ounce if I've got it and ankylosing spondilitis as well. And the bad genes are such a thing, aren't they?? My mother--a hematologist--has been trying to figure out my autoimmune link for a long time--many of my grandmother's siblings/nieces had autoimmune issues, but they didn't pop up again in the family until all of my weirdness started. My mother likes to say that she may have passed on the bad genes, but my father probably passed on the "On Switch" gene to trigger them (they've been divorced for 30 years and loathe each other, so there's that!)Naomi--I'm SO happy to hear that you're going to see an eye doc for your issues...it's weird how this forum works sometimes, isn't it? Good luck, and keep us posted!! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 1, 2013 Report Share Posted February 1, 2013 I am so glad you had it checked and everything seems that it will be okay! I did not see smoke, but a few months back I had a two-week period where my already-sensitive eyes were having a super-sensitive time. Even in my house the light coming through the windows was really bothering me. I did just chalk it up to my POTS issues, but next time I will go to the doctor! Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted February 1, 2013 Report Share Posted February 1, 2013 Isn't it funny (it's actually quite sad) how so many of us (and at times our doctors too) just tend to attribute every little weirdness to POTS/dysautonomia?Last year I had a ton of tests, I spent days in the ER and in the hospital for BP issues and all I ever heard from my drs was that it's anxiety, or it's POTS, you'll have to learn how to live with it, your ANS is uncooperative, and so on and so forth....until the day I decided - against medical advice - to decrease the florinef, the water and the salt intake...and guess what, my BP is now behaving, so it wasn't a POTS thing after all.I believe that many of us have been told for too long that we have anxiety and then we got the POTS 'label' and we're simply used with that. The result - we've given up trying to get professional help for our problems. Instead, we try to ignore whatever bothers us and look at it as 'another POTS thingy' and that is not always the best approach. Sometimes we may even forget to trust our instincts and we simply learn to live with our problems instead of trying to find answers.No offense to any of my drs, but this forum has been more helpful than they have been, and I can only be grateful for everything I've learned from everyone here. If only you guys could be writing prescriptions ...then I'd really fire them... Ophelia, I'm so glad that you got that checked out and you caught it before becoming a more serious issue. Also, thank you for the 'wake up call'.Naomi, please keep us posted about your eye dr appt. Hopefully it's nothing bad.Best,Alex Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted February 2, 2013 Report Share Posted February 2, 2013 Called the eye Dr. this morning and they told me to come in this afternoon. Had a full exam and all looked fine except for my thin tear film - incredibly dry eyes... which in this case I believe does relate to my dysautonomia. I already knew I have that, but he thinks this could cause the smokiness I'm seeing. I'm not sure that fits? Anyway, I do need to address the dry eye because it causes a lot of discomfort. Anyway, the point is not lost - we shouldn't take a chance and ignore weird new symptoms because you never know. Thank goodness you had it checked ou, Ophelia and will be ok with medicine. We also shouldn't neglect basic care. I was long overdue for a full eye exam. I've spent all my Doctor time looking for weird diseases that could be causing my dysautonomia, but have neglected the basics! I feel a mammogram coming on.... Quote Link to comment Share on other sites More sharing options...
Chaos Posted February 2, 2013 Report Share Posted February 2, 2013 Naomi- especially important to make sure you're keeping up with basic care, especially things like mammograms if your NK cell count is low. From what Dr. K was saying yesterday, the NK cells are the ones that scavenge around and clean up your own cells when they go bad/mutate/go rogue/ start becoming tumors etc. If your NK count is low as it is with most patients with ME/CFS then that becomes an even more important reason to keep up that basic care it seems? Ophelia- Hope your eye is feeling better. When my son had the uveitis it was painful, but I think his was also more posterior as well. They initially diagnosed him with pars planitis, then changed it to uveitis. Either way, he wasn't a particularly happy camper. If you're still struggling with your issues from a few months ago and now this on top of it......ay yi yi girl!! Quote Link to comment Share on other sites More sharing options...
Birdlady Posted February 2, 2013 Report Share Posted February 2, 2013 I was having eye problems and went to my retina specialist, but he did not seem to care at all. I think this is why we tend to avoid going to the docs. We are treated really awfully, so why go in and get abused over and over again?About 4 months ago, I woke up with a blind spot above my center vision and went to the docs a week later. The doctor told me he had no idea what was wrong, but instead of running tests, he did nothing at all. Now I can't go back because I no longer have health insurance. So it's frustrating.I am very glad that your doctor did a detailed exam, actually showed some concern and was able to help you. When it comes to my eyes, no matter what I have going on with them, they just do not care. These are the best docs in the area too. Quote Link to comment Share on other sites More sharing options...
ophelialit Posted February 2, 2013 Author Report Share Posted February 2, 2013 Chaos--Tell me about it!! I actually had miinor surgery for the aforementioned issue on 1/23 (for those who are not familiar, I've been dealing with some....ahem...unpleasant issues related to my IBS)...so the day I had to go to the eye doc was the first day I was able to drive following surgery, I was hoping to take a nice drive to the park and maybe walk around a bit...but naaaaaaah, much more fun to have an emergency eye exam and receive a crappy diagnosis with potentially more to come. I've gotta be honest--I'm pretty much at the end of my rope here patience-wise...I need a break, universe.....you hear me out there?? Helllllllooooo.....sigh. Quote Link to comment Share on other sites More sharing options...
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