Hi,
Been to see opthalmologist today, and feel like that signalled the end of my good luck with docs (mistyped as dics initially, maybe I should have left it like that!). Gp basically referred me to both opthalmologist and Rheumy at same time, as the problem I was having was unexplained recurrent corneal erosions. This highlighted Sjogren's as a possibility as I have joint pain, and fatigue, and an autoimmune history. GP took ana, and found that it was mildly elevated, then rheumy took more bloods including Ro and La.
I hadn't had results as not due to see Rheumy again till May 7th.
The opthalmogist was not a people person, and basically started off saying I probably didn't have Sjogren's as it wasn't just dry eyes you know! I said I knew that, and that rheumy had seen me and said it sounded like Sjogren's, as I had dry mouth and nose too, along with joint pain and fatigue. Anyway to cut a long story short, he went off and got my blood results, and told me they were all negative (so no Ro or La). He then went on to say it was unlikely I had it, but let's look anyway.
He then looked at my eyes, and said there was no damage, so unlikely me eye was dry. I told him that before I had been using the drops when I first had the erosion, the doc told me they saw damage from dry eyes. He agreed then to do a Schrimer test, but you could see that he thought it was a waste of time.
After he had inserted the paper, and I had my eyes closed he started goign on again about how lucky I was that my bloods were negative, and that he felt my eyes were ok, so that was good news, and I started welling up and feeling like I was going to cry...I mean it is good, but I still have all my symptoms, and so if bloods are negative then what have I got, and when will I know?? I was really worried I was screwing up the test by crying and was biting my tongue to try and beat back the tears.
I shouldn't have worried though, it came back with a measurement of a big fat 0. :o
He seemed quite surprised, I know he was expecting it to be normal, based on his previous attitude, but he didn't really offer any advice, other than to say I don't need anything else other than my drops I already use, as there are no signs of damage. He didn't suggest any kind of follow up, and said I don't need one unless it get worse (how can 0 get worse?), and he didn't offer any other kind of product. He even said he thoguht the Rheumy would have trouble diagnosing me and I would just have to wait and see what happens. He did agree though that a woman of 33 should not have eyes this dry, and it does indicate something is wrong (no sh*t sherlock!). Quite annoyingly, he also spent half of the appt talking to my (not that substantial?) chest...
I don't really know why I have posted this, other than I feel a need to vent, and I don't feel like my partner or family/friends understand or care all that much about this... Other half has a sore throat today, and so he is totally uninterested, and only thinking about himself (men! that's a whole 'nother post!)... :(
Anyway thanks for listening!
Leah xx
Darling Leah,
I guess to look on the bright side.....you've weeded out another doctor to NEVER SEE AGAIN!
Hopefully the Rheumy will see your schirmer's score and be able to determine a diagnosis without the blood markers.
My optho. is the same as yours and I really hate him for it. Luckily my eyes are not very dry so I don't need him to do a good job, he just has to make sure Plaquenil doesn't hurt my retinas. I rely more on his "helper people" who work the peripheral vision machine.
I'm praying your appointment on the 7th goes well! If not, you will know another doc to weed out!
Janna
Awww! Big Hug coming your way Leah..
Youve' not described anything that most of us haven't gone through, be it with the Docs ...or our families..
It's so humilitating isin't it.. I had a similar incident with a supposedly eye specialist a couple of years ago..
But hey, see Epsons latest thread , miracles do happen, hope yours comes soon.. Hugs Dolly.
Hi Leah,
That really sucks that your ophtho was such a dick. Did he even discuss any treatment options with you after he saw you have no tears? I would definitely shop around for a different doctor. Did you see a regular optometrist previously? Maybe they could refer you to another doctor in your area and get a second opinion. I don't know if your insurance requires a referral to a specialist, but it's something to think about. Perhaps your rheumy or your GP could also suggest another doctor. There's no reason to stay with a doctor you don't feel comfortable with. I can't believe he didn't offer you any products to try either! Every time I leave the ophtho my purse is chuck full of samples. I really hope you're able to find another doctor. My eyes have improved a lot with a combination of punctal plugs, Restasis, and preservative free tears.
Best of luck in finding a new dic!
Erin
Leah,
I also had a bad ophthalmologist experience. She told me my rheumy was wrong and I can't have Sjogrens because my eyes, although the tear film looked thin and my green stain test indicated they were very dry, weren't damaged. She said I should try drinking more water. I asked her if the extra water would also help with my lung inflammation, malaise, pain, etc. :)
I found a new ophthalmologist who told me my eyes were dry, "consistent with Sjogrens" and offered to put in punctal plugs.
Hopefully you can find a good ophthalmologist soon.
Sorry you have to go through this.
Sparkle
Hi guys, thanks so much, it's good to know I'm not the only person that has had a cr*ppy eye doc (and good to know that you guys think my appt sounds cr*ppy too)...
He did give me one sample of some eye drops, but only because I asked him if there was anything else I could try... He gave me some samples of Ocusan...
Now I have vented, and had some sympathy ( ;)) I feel a bit calmer about it all. I do have a lovely rheumatologist, so hopefully he will either see past all of this, or order some more non-blood tests. I think I am just fearful of what he might say. I don't think it was helpful for the opthalmologist to get the blood tests and tell me, cause if I had found out on the day of my rheumy appt as planned, then I would not be worrying about what the rheumy will say.
Thanks guys,
Leah x
It is interesting that there are so many doctors out there that don't have a clue about Sjogren's and probably don't really want a clue either....
Having very dry eyes was one of my first symptoms of Sjogren's. I went to my optometrist complaining of very dry eyes (even had a blister on my eye it had gotten so dry) probably 3-4 years before my SS dx. My doc then said my eyes were dry from sleeping with the ceiling fan on at night... huh???? Anyway she was an optometrist and not an ophthalmologist so I can't blame her totally. My ophthalmologist here tells me my eyes are not "particularly" dry. He tossed me a sample bottle of Visine last time I was there. When I asked why my visual acuity had gotten so bad in the past few years he told me I was getting older. He really didn't want to be asked any questions anyway. I'm now looking for a new ophthalmologist too....
Leah... I hope you find a new doc that is not a "dic".
Leah, Hang in there and remember you are supported by a community of people here who have and are dealing with the frustrations you are. ;D
I often fantasize when I get my 'confirmation diagnosis' of the letters I would write (tactfully of course) to all the doctors who disregarded my symptoms and failed to do what I think a doctor's job really is ... "to help patients". Mostly so it might not happen to someone else seeking answers.
Who knows, maybe he thought he was helping you by minimizing your symptoms. But when doctors are dealing with possible autoimmune disorders (very ambiguous by nature) I think they should not be so quick to judge, or even make a diagnosis. Everything should be done to make an accurate diagnosis of someone's health problems. Sometimes I fear I may be viewed as a hypochondriac, but I know in my heart that I am trying to answer these questions so I can treat the problem accurately.
Don't hesitate to get a second, third or even fourth opinion. When my aunt was diagnosed with breast cancer for the 2nd time she went to four doctors until she found one that would tell her he was "convinced she could beat this" .. and she stuck with him (mostly because he made her feel positive about the possible outcome) and so far she has been cancer free for 3 years. For whatever that may be worth. All the best, Amie
As someone with Sjogrens, with dry eyes being my biggest factor, I believe an ophthalmologist or optometrist would not be able to diagnose you with Sjogrens (or not). They can measure the moisture in your eyes, look for dry spots and very few other things. Not all Sjogrens patients have dry eye. I had dry eye for years brought on by Lasik surgery and went to eye drs all over the country. Not one of then ever mentioned the possibility of Sjogrens. Lasik brought the dry eyes out, or started them, then somewhere in time Sjogrens started and the rest is history.
But, an eye doc just doesn't have access to enough stuff to diagnose Sjs. Lucy
Leah - we've all been there and I'm so glad you came here to tell us how you felt. Maybe we should have a section of the web site with sample letters to doctors which we could adapt for personal use? I'd like to send one to the doctor who told me to 'go home and give myself permission to be well'.
Ah, yes. The sort of doc/dic who can't drag his eyes away from our chests. I've never been brave enough to do it but I've often wondered how they'd react if we stared at their 'interesting bits' (or not so interesting bits, to be honest!).
It's a rocky road to diagnosis but it's good that the rheumy you saw first was a 'keeper' as we say here. Maybe you should tell your GP that the opthalmologist was a disappointment so that he doesn't refer other people to him? The rheumy should know too because it sounds as though the opthalmologist is treading on 'his' territory by commenting on your blood results. You'll find that lots of people here are diagnosed even with negative blood tests so don't be put off by that - search the site for previous posts or ask a new question.
Take care - Chickpea
ps men/partners are definitely worth another post. But watch that Epson for wild, wild comments!
Hang in there Leah. We've all come in contact with at least 1 bad dic, I mean doc. Remember that you are the most important advocate for your health. I'm really finding some interesting posts and people in the same boat as me on this site.
So here's a big hug for you.
Take care,
Leslie
leah
oh i felt that way when i seen a private rheumy a few months back who said i had mild fibro and my eyes werent that dry ,its stress go home and think your way out of it grrr!
funny he should have listenned to the fact i was DX dry eye syndrome and badly dry at age 7 30 years ago !! strangely last week i seen an opthomologist and my shcimmer was very dry , and said my tears evaporate in 2 seconds instead of 10 ! talking dut plugs if drops dont help ! rheumy needs shooting if you ask me .Good news was i have no damage even after 30 years of drynesss, so how anyone can say you cant have SJS if there is no damage is tommy rot ! i can also read 3 lines below 20/20 vision, but before my latest drops, the pain behind my eyes was horrible, and left eye lids gets the odd ulcer as well.
I remember getting bloods done each optho appointment as a kid, my mother asked why then, they said oh its just routine, but i now know its was my ss a and ss b they must have been checking, they put the rose bengal dye in my eyes and by god my eyes were bright red even then !!still sero negative today, last rheumy said if it wasnt in blood you couldnt have it, new rheumy said more than possible to be sero negative, why the lip biopsy , i tell you some of them need some retaining and fast, also some ppl skills training, bet he didnt not know about sending a bill though !
strange one of the criteria for SJS diagnosis is dry eyes , it doesnt state damaged eyes!! so sorry youve had this upset from a fool, get to another optho , this ones talking out his back passage sadly
T x
Leah, Sorry about your experience. He should join in the Docs with a poor bedside manner Hall of Shame.
Roxanne
Hi to all,
I feel so humbled that so many of you read my post, and wrote to give me your empathy... I feel very lucky to have found such a suppportive group!
I do agree that he shouldn't have been diagnosing, or undiagnosing SJS. I felt all through the appointment that it was the big elephant sat in the corner. I didn't say I thought I had it, just that I was under investigation, and he kind of leapt on it, and it felt almost from that moment on he was trying to disprove it. I am definately going to tell my GP he was a "disappointment", although to be honest it was the local eye infirmary who suggested a referral to him, so my GP just went along with it. I do remember them saying the was the corneal expert, so maybe why he was so hung up on damage.
Chickpea - I wish I had thought of staring at his bits! Probably wouldn't have the guts to do so, but it would have evened up the feeling uncomfortabel score a little. "go home and give yourself permission to be well!!!" unbelievable, I guessing it didn't work LOL!
McH - I actually was so thrown by the whole thing, that I didn't even remember to tell him about the horrid aches I get in and above my eyes, but I agree his back passage is very talkative! You kind of assume you will be getting a better deal by going private, and it seems to me the main advanatge is quick appts, but the quality is no better...Sounds like you had SJS a long time ago - why do they not know about seronegative?
Luckily I suppose I don't need to see another ophth for the time being, I guess once I get a diagnosis (IF!) I will go back through NHS and (hopefully) get a more sympathetic Nurse or registrar...
Leah xx
leah
i honestly have no idea what some of them think or why they think you cant be sero negative, according to the sjogrens foundation 30% of sjs sufferers are. Rheumy also told me if i met a real sjogrens sufferer id know i wasnt for they have no saliva at all! i said surely that is end stage ?? he laughed. strangely i went to se maxillo facial surgeon today about my lip biopsy, bit disappointed he didnt to id today, he will call me back in a few weeks and do it then, he did however talk to me about all my bloods, symptoms, read opthomologist reoprt, examined my mouth and gave me a spit test( spitting into a cup when i felt saliva for 15 minutes) and he said normal was 1.5-2 mls of saliva, i had less than 0.5, he said oh we shall do the lip biopsy, sometime sits negative , sometime sits positive but really it to his mind made no darn odds, for my mouth was dry, so were my eeys and i have all the features of SJS, but he will do the biopsy and reassured me that it was nothing to worry about he had did many over the years and no problems ever came of it, was such a nice man, makes a big difference !!
Yup i went private to get a faster appointment and wasted my cash, he was ignorrant, rude and kept saying that fibro patients, has usually been sexually abused as children and looking deep into my eyes to see fi that had been the case, i laghed at him ! stupid man !
All my other ologists now have been NHS, and could have been anymore thourough or nicer, my new rheumy a young woman, is so nice, explaine dall about sjs, what meds were avilable and fact that sero negative was common, that even if lip biopsy was negative, she would treat my symptoms and put me on planequil.
chin up honey some of these ppl would have us believe were suffering from hysteria, when actually we just know our own bodies and that things are far from normal, dont let this man put you off, i know myself its deflating and horrible, but he is one docotr and thankfully theyre not all like that !
T x
You know what I think? So what. Who cares. He's just an ophthalmologist! LOL As long as I've had this no eye doctor has done a dang thing besides tell me to use eye drops. So? He told you that too. I mean really if you have a rheumotologist thinking it IS sjs, who cares what a rude eye doctor thinks, the schirmer test speaks for it's self, and that is all the rheum will care about anyways. So really look for the positive, you got the eye test done, and it was positive, that is still a step forward, regardless of what his personal opinion is about whether you have sjs or not. There's an awful lot of "specialists" out there that have been trained on these matters but for whatever reason are not able to recognize something when they see it.
Wow Leah, I'm sorry you went through all of that. You know some of these doctors really don't ever try and put themselves in our shoes. How dare we try and find an answer to our problems? Unfortunately sometimes you have to kiss a few frogs but there ARE good docs out there. Some its a delicate balance because some may not have the best bedside manner but may be a very skillfull knowledgable doc. Its wondeful when you can find both. I knew I found the right rheumy when he flat out told me that he "can't even begin to imagine how difficult it has to be" for me. Wow, when a doc says that and he knows his stuff, KEEP HIM! I unfortunately couldn't because he didn't take my new insurance. Luckily, my new rheumy is a good doc, just not like my last one you know?
I can't believe that he didn't want to at least suggest something more for your eyes than just drops. Just because you don't have damage now doesn't mean that without the proper treatment you won't in the future. Preventative measures are just as important as treatment. I would give the feedback to your rhuemy about your shirmers test results and see if there is anything they can do for you and discuss your concerns. They may be able to put you on a treatment for the dry eyes even.
Good luck and keep us updated!
I have one DIL who is an optometrist and she watches my eyes like a hawk. She gives very go examples and keeps her eye out for cornea problems, etc. As soon as I was diagnosed with sjogrens she started me on Restasis(dry eyes was the last symptom that I got and came just weeks after diagnosis) and I have been really lucky to have escaped the really severe problems. I swear by the Restasis and when I was in my sjogrens study at the U of M they remarked at how good my eyes were on the Restasis.
In my state my DIL says that the state optometric association meeting is always deluged with information about sjogrens. They are very up on their training and info. I think a lot of the problem is with some docs not wanting to get that involved. All some want to do is do eye exams.
If you find a good optometrist or ophalmologist hang onto them other wise keep on looking. Too bad we all have to spend so much money on food, gas and dr bills not to mention our time and comfort level. Irish ;D
Hi,
Thanks for all of these replies! I feel so looked after...
I haven't been able to get on line since Friday, so missed all of these replies, but time is the great healer (well emotionally, maybe not for Sjogren's ;D)...
Looking ahead to the Rheumy appt, and remembering what he was like (he was a sweetie, just like yours dbab), I am more certain it does not matter what the Opthalmologist thought - the fact is, as you so rightly point out missyb - I proved I have a major SJS symptom - very dry eyes!
As far as the products are concerned, I am just going to see how things go for a bit, and maybe by a few things online, as I am also lucky that I have a very nice GP too, and if I find something I like, I feel sure he will prescribe it for me, and as I have thyroid probs, I get my prescriptions for free...
Thanks again,
Yours feeling a bit sheepish for having been such a drama queen,
Leah xx
Darling Leah,
You certainly are a Queen and we happen to love your drama!
Let go of that sheep!
Don't forget to update about the Rheumy visit!
Janna