Exhausted after eye exam??
jenn
17 years ago
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agnespuffin
17 years agocatherinet
17 years agoRelated Discussions
Saints, Dry Eyes and other stuff.
Comments (23)Hi Karen, this is going to be a bit long but please bear with me 'cause early Sjogren's is sneaky & I'd like to give you a reasonably comprehensive overlook. I'll start with Dry Eyes & Dry Mouth 'cause they are hallmarks of Sjogren's. Dry Mouth - Even as a teenager, I remember always having a drink with me although I don't exactly remember why. Never went to the store, never went on a date, etc. without that drink. It was a part of me. It wasn't as if I felt urgent need to hydrate myself. Just always this desire for frequent small sips. That continued for the next 30 years but didn't get any worse. About 6 years ago, it became uncomfortable enough I started mentioning it first to DH. "Gosh, my mouth feels like cotton balls!" Soon, it was bothering me enough I mentioned it to my primary care doctor. I was taking Flexeril at the time for a spinal injury & my PC doctor just shrugged the dry mouth off as a side affect. Now, it's so dry it bleeds. Mouth sores - yes. Dry lips - yes. Blisters - yes. The dry mouth has progressed to now being nearly impossible to deal with but that has taken decades to reach this point. Dry Eyes - My eyes have sorta "itched" for several decades. I never thought much about it. I've had eye infections over the years also but they were far enough apart I didn't think to mention it to a doctor when a new one turned up. Dry eyes have not been my primary focus with Sjogren's but they are now dry enough my opthomologist pretty much insisted I have the Eye Plugs inserted. They've helped, a lot. I still need drops. Eye lid infections - yes. Sores in the corners of my eyes - yes. Swallowing, Talking, Choking - My Sjogren's has progressed to where I can hardly talk anymore. I also have trouble chewing & swallowing. Many foods are impossible for me to eat. My diet has changed dramatically in the past 3 years. I also choke - especially on pills but also just trying to eat a meal. At night, my throat swells & sticks together blocking off my air. I wake up in a panic reaching for water. Dry Skin - Again, for as long as I can remember I've had dry skin. I'd go through gallons of lotion. Now, I use prescription stuff that really helps. Fatigue - Gosh, just thought I was "weird" & a bit unlike my friends. I never had a curfew as a kid. Mom knew I couldn't stay up late enough to need a curfew. She was right. Sometimes, I would fall asleep practicing with my chin on my accordion. Again though - nothing that seemed like a trip to the doctor was necessary. I will say though that the fatigue was complete. Sometimes, it felt like lifting my arms to brush my hair was impossible. Muscle/Joint Pain - Today "this" hurts, yesterday "that" hurt. Everyday, somewhere else hurt. The pain would last for a day or weeks & then disappear just as mysteriously as it had arrived. I thought it must be "normal" & I was just a wimp. I was diagnosed with fibromyalgia at some point & from then forward whenever something hurt doctors would just shake their head & use that diagnosis as explanation for my pain. Many times the pain was unbearable. I once overdosed on aspirin trying to get relief. That episode resulted in more blood work. Negative for everything. The pain though continued. In my mid-40s, I had an extensive & unusual spinal surgery to correct a rare injury. The surgery almost did me in. After that surgery, doctors blamed the surgery every time I burped. I should note that I've had 13 major surgeries for "unusual" stuff. Fevers - I have a history of spontaneously running a fever. Fine one minute. Poof, next minute...I've got a fever of 101+ degrees. An hour later, I'm fine. Nightsweats - I've had then for decades. Always associated them with some cancers (I'm also a multiple cancer survivor) so I was afraid to mention them to my doctors. But, my fear didn't make them go away. Still have them. Still haven't told my doctors. Heart Palpitations - Ended up in ER. Diagnosed with "Anxiety Attacks". Nope. Sjogren's. Sensitive to Temperature Changes - I'm either cold or hot. There's only about a 5-8 degree range I'm really comfortable. It's not just chilly or a bit warm either. I'm either shaking from cold or in ER from heat stroke. So, we keep our house even temperature year around. Sometimes, cost isn't everything. Dental - Gosh, where to begin? Let's just say I fought a good fight but just a couple years ago I said, "ENOUGH! I can't tolerate this anymore. Pull them out, every single one - NOW! I'm not leaving this office until they are gone." Even implants would not stay in my jaws. I've pulled two that were erupting from my jaw by hand in the middle of the night to stop the pain. Now, I've got dentures (should have done that years ago!) but my mouth is so dry my tongue sticks like glue to the dentures & bleeds when I try to move it. Ugh. Neuro Pain - This is now a serious problem. I have no feeling at all in my legs/feet. Seriously, I can't feel the floor or anything else. Sharp pins/needles type pain virtually constantly. Stress - I had a garden accident July '09 & re-injured my spine around the surgical area (right between the shoulder blades). My back surgery had been so "unusual" a hotdog surgeon was brought in from Arizona. He published a "White Paper" on me that lives for eternity in medical journals along with the video they took of the the entire surgery. Anyway, the re-injury hurt so bad I had a stroke. Yep, I met the definition of "stressed" there for awhile. As I started to settle down from this little incident I noticed that my mouth was drier, my eyes were drier, my muscles/joint pain was worse, the fevers were more frequent, etc., etc., etc. I could go on with other symptoms but I think that's enough for you to get an idea of Sjogren's. Eventually, I found a doctor that treated me as a whole patient & didn't just look at the reason I'd written down for that particular appointment. It led to my diagnosis for both Lupus & Sjogren's. A word about the bloodwork is in order here, I think. I'd had these tests multiple times before - always negative. Many doctors said, "Tricia, I "think" you've got Lupus but your tests don't bear confirmation of that diagnosis." One even prescribed Placquenil & my fevers virtually disappeared. Unfortunately, that doctor left the practice & his replacement didn't believe my tests justified the risks of Placquenil. The fevers returned within a few short months. Anyway, my current primary care doctor redid the bloodwork yet again. This time, I was positive for both Lupus & Sjogren's. It tooks decades for those tests to turn positive. My last SS-A test results were 2.78. Positive. My SS-B test results were 3.25. Positive. Also, Sjogren's patients often show Vitamin D deficiency. I'm almost always testing deficient & take 50,000 mgs once/week for 4-8 weeks then off for a bit until we test again then back on for another 4-8 weeks. You will also, most likely, have an abnormally high SED rate. It will vary if you're having a Sjogren's "flare". BTW, that's the best time to make the doctor's appointment - when you feel awful, like you can't drag yourself anywhere. I'd recommend finding a doctor that will treat ALL of your symptoms. Treat you as a whole person with this variety of things happening that may seem unrelated, to you. Tell your doctor every little thing. Sjogren's is SYSTEMIC. It affects your whole body. Yes, there are specific markers like the dry eyes/mouth thing but many Sjogren's symptoms mimic other diseases. Diagnosis is often overlooked both due to doctor indifference & lack of persistence in patients. There is no defined Sjogren's protocol for treatment. It's a "treat it as it appears" approach for most doctors. (bummer) But, a protocol is being developed now & the goal is that it will be available to doctors in 5 years (I know, sounds like an eternity but, like breast cancer, you have to start somewhere). I've recently been excepted at John Hopkins. They have a specific Sjogren's department & a doctor heading that clinic who has chosen Sjogren's as his life work. My first appointment is October 18. I've received volumes of "stuff" from John Hopkins regarding my appointment that will be two full days. I'm got appointments for about a dozen specialized tests. I've got advanced Sjogren's & frankly feel just about defeated. After 50+ years, it's taken a toll. But, I accomplished a lot with my life - Sjogren's be damned. I don't know if my disease process will help you identify what you're experiencing, or not. But, don't ignore your symptoms. If they sound like they could be Sjogren's - be persistent. Just know that it will be a journey to diagnosis. Not a short sprint. Since getting me as a patient my PC doctor has been able to make a diagnosis on another women for Sjogren's. She's thanked me saying she would have overlooked the clues had it not been for having me as a patient. We're learned together about Sjogren's. So, doctors are becoming more aware & Venus Williams' diagnosis, hopefully, will also draw more attention to this autoimmune disease. mboston, don't give up. If your gut feeling is correct (and, IMO, our bodies usually tell us the truth) then you'll need to stay in your doctor's face until you get a blood test that pops positive. That can be illusive. If you're having a flare...make an appointment. Tell the receptionist that next week is not OK...you need an appointment tomorrow! /tricia...See MoreExam
Comments (11)I had these info written in my 2nd post but when I remove the pics they all gone. I got most of the hosta from friends/neighbors, they are non-collector (meaning: they are not ' hosta crazy' like you guys:), so most of them got from bbs. A couple might from nurseries (like that pineapple thing, I never seen it at bbs). I also bought a couple from bbs last year.Those I got from friends I don't know how old they are. I got them either last year or this year. It never occurred to me that I needed to ask the name and the age. And now when I asked most of them have no idea what is the name of the hosta they gave to me. Pretty new to garden, and ALREADY proud of myself of moving focus from flowering plants to foliage :) as I am going to buy more, knowing what I already have becomes somehow more important. :) And some of those choices I listed has nothing to do with the plants, I have to make some names. But I think the less rare one will be more likely. I checked the hosta lists site and omg I think this might be an impossible mission, so I guess I will just enjoy them meanwhile. Are their flowers any help for id? I have some that flower soon. Was planning to take pics then and post. Thank you for taking the time. Very appreciate....See MoreReminder: Milkweed sap or residue in your eyes is REALLY bad!
Comments (5)Battling the very same thing right now. Clipped my milkweed to feed my cats last night, rinsed off the milkweed then washed my hands. there must have been just a little residue on my hand and at some point I must have rubbed my eye. But about an hour later, my eye started really burning. Not sure why but I had a hunch it had to do with the milkweed and so I googled it. And sure enough that stuff is super bad for the eyes. I knew it was poisonous but didnt realize the danger to eyes. rinsed eyes well with saline and dropped in some “real tears” after a quick run to the pharmacy. Redness and pain went away but woke up to a fog in my left eye and full blurriness. Called the eye doctor and he fit me in that day. He was taken aback by the intensity of the corneal edema that was on my eye. I told him about the milkweed and the google search I had done. Normally doctors don’t love dr. Google but this time he came in handy. He called the hospital eye specialist (big hospital in LA) to see if he had ever heard of the milkweed reaction and neither had even come across this in their 40+ years of practice. I guess my accident served a good educational purpose. Hope the knowledge can help someone in the future. Eyesight at dr in left eye was 20/200. So legally blind In that eye! So thankful it wasn’t both eyes! I am currently on both muro 128 hypertonic drops and dexamethazone drops. Hoping this starts to resolve tomorrow. So crazy. Will be educating others to be more cautious in future....See MoreWhat a racket -- eye doctor/glasses/contacts.
Comments (20)I had cataract surgery in my right eye. Supposed to correct for distance AND astigmatism. Paid extra for a "Toric" lens to correct the astigmatism. Nope. Still need glasses to correct for astigmatism. I see extremely little difference in 'color clarity' between the operated eye and the left eye. I think I didn't NEED the surgery at all! After all of that I went to Costco for my eye exam and glasses. I have close vision correction in the right lens and no-line trifocals in the left lens. First pair of glasses needed tweaking. No questions about repeating the exam and re-making the glasses. No costs....See Morewoodnymph2_gw
17 years agocatherinet
17 years agojenn
17 years agocheerful1_gw
16 years agosocks
16 years agoacey
16 years agocheerful1_gw
16 years agosammy zone 7 Tulsa
16 years agogrittymitts
16 years agoBri Walling
7 years agocmuschany
6 years agoSamantha Edberg
5 years ago
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