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Old 04-23-2013, 10:50 PM   #1
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Long year

Hello everyone out there....
I would only like to share my story in hopes to 1 get it all out and 2 maybe someone will read this and think to themselves "I'm not the only one" Because at times I sure do feel like a "faker" when I'm trying to explain what my "at the moment" problem is....
So here is my story, A little over a year ago I was a perfectly normal 28 year old. I held two jobs and still had dinner on the table for my at the time 3 year old. Normal people would not have thought of me as healthy do to my weight but I didn't mind it, a little over 5 feet and 250 pounds of lovin . well it all started with my eye, a consistent pain behind my eye, then redness, I knew something was wrong but I knew it wasn't pink eye (there was no discharge) so I went to the DR. without even looking into my eye he said it was pink eye and sent me home with eye drops. the eye drops burned when I put them in so I only used them once. the next morning I woke up looked in the mirror and noticed my pupils were 2 different sizes, I went to the ER. They said it was not pink eye but didn't know what it was and sent me to a specialist, the special eye Doc diagnosed it as iritis, gave me some drops and sent me on my way, normal iritis goes away within a few weeks with the drops, I STILL HAVE IT! More then a year later, eye drop after eye drop, steroids, and cataract surgery, its still with me. Shortly after I was diagnosed with the iritis other things started to effect me, my joints started aching, I noticed when I brushed my hair my brush would be full after one brushing,feeling rundown,achy,Stiff in the morning, I started getting migraines that are so severe I throw up every time, upon throwing up for no reason I do that too, I'm a big girl at heart, I love my chips and candy but I have lost over 100 pounds for no reason,and my skin started to be effected by cold. All of which I still deal with and I'm sure I left out a few because I tend to have moments that I cant think straight or studder on what I'm trying to say. I went to my DR. (same one that said I had pink eye when I didn't) and he ran full blood work, I was scared of course but never thought it would be Lupus, my mother has Lupus, but only a couple of alike symptoms, He also said that I had urticaria, a cold allergy and told me to find a rheumatologist. I went to one but she dismissed it as fibromyalgia. At this point I'm lost, my mother had me switch my DR. to her DR. because he knows her background so recently I did, oh I need to mention that my eye DR. the one who treats my eye and did the cataract surgery is my new DR.'s son. Well my new DR. ran all the test again (at this point they have been ran 4 times, all with high ana) ana was high, again, he dismissed the fibromyalgia but will not yet say okay this is Lupus, he said he is gonna see where its at in another year. His son my eye Doc. said he is 99% sure its lupus but has to wait for his dads diagnosis to put it in my file. Should I be glad that he is being thero? After my first diagnoses I told my family, now I feel like a fake yet I know that this is what it is, oh and here is the big kicker, the cold allergy that my first DR. diagnosed this DR. who will not give me a yes thats what it is answer said that I don't have it, he diagnosed it as Raynaud's. What the heck!!! He is willing to say I have Raynaud's( which like the iritis is connected to Lupus) but will not tell me why I have all these other random symptoms.

Thats my story, it's not easy getting a diagnoses, hopefully I will get one before anything truly bad happens to me, and I hope is some way this may help someone else.

 
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Old 04-24-2013, 06:53 PM   #2
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Re: Long year

My last sentence doesn't sound the way I wanted it to, what I mean by saying I hope I get a diagnoses before something truly bad happens is that now that I have started over with a new doctor that has not yet diagnosed it as Lupus even though I was already diagnosed with it by my old doctor, I dont know what to tell people like doctors in the ER, I was there a month ago and told the doctor that I may have Lupus and I swear I could hear his eyes rolling as he walked away, I just want a name for my troubles and not to feel like I'm making it up. A name can help if something goes wrong because doctors would be able to take care of the problem faster when they know whats causing it. just very frustrated

 
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Old 04-25-2013, 03:08 AM   #3
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Re: Long year

Jeni, hi & welcome. This has to be terribly frustrating. I think many of us know the feeling, although that's hardly helpful except in the sense that you'll meet people here who will understand you & no doubt throw out some good questions & suggestions that you might find useful.

Moving along... Given repeated high ANA, have you gotten copies of all your labs to see whether tests for the "ANA subtypes" were run?

For lupus, you'd first look for the 3 "subtypes" that are included in the lupus diagnostic criteria: anti-ds-DNA, anti-Sm, and antiphospholipid. HOWEVER, there are quite a few others that can occur in lupus that aren't in the diagnostic criteria because they're less specific to lupus, so you'll want to check for those as well, e.g., anti-Ro, anti-La, anti-RNP, etc. (there are a bunch). BTW, the diagnostic criteria are in one of the "sticky posts" (permanent info posts), which you'll find above the user threads.

Your doctor's follow-up plan is rather surprising to me! Waiting a full year seems like a long time... Does he at least do ongoing urinalysis, which is a cornerstone of lupus monitoring?

Additionally, do you know what *other* ANA-positive conditions have been considered? There are quite a few of those, too. Losing 100 pounds for no reason is really startling! Do you have other symptoms that might point to some other autoimmune? e.g., for GI problems, I'd think doctors would likely investigate Celiac, ulcerative colitis, Crohn's, etc. And have you seen an endocrinologist to check for thyroid conditions---for one example, Graves' disease? (I think of it b/c it's associated with eye problems and weight loss.)

Regarding your "optic neuritis" or "iritis" that hasn't gone away despite steroid drops, cataract surgery, etc.---se months ago someone here wrote about severe optic problems that persisted. I'll see if I can locate the names of the conditions her doctors were considereding (last we knew). If I find those names, I'll post them.

I hope others add more. We'll look forward to your updates. Sending warm wishes, Vee

 
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Old 04-25-2013, 03:57 AM   #4
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Re: Long year

Jeni, I found the two conditions that were being considered by the doctors of someone who wrote about her very difficult eye problems. The conditions her doctors mentioned were Polymyalgia Rheumatica and Temporal Arteritis (aka Giant Cell Arteritis). But I'd bet those are only 2 of a whole slew of possibilities for your ongoing eye issue...

I know I've read something somethere about one pupil looking larger than the other. If I remember*, I'll post again. Thinking of you, Vee (*clearly NOT aging gracefully )

 
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Old 04-25-2013, 06:23 AM   #5
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Re: Long year

thanks so much for your message, it is nice to know that I now have a place to go that people can understand, when this all started I remember my boyfriend saying "you wont be happy till someone says your dying", because I knew that my eye problem was more than pink eye, so my family doesn't or cant relate to me. I was diagnosed a year ago with lupus by my doctor at the time and the first rheumatologist, the rheumatologist was 3 hours away so I found one closer and that is one one that said it was not lupus it was fibromyalgia. My mother, who I am not that close with do to other reasons told me to switch my main Dr. to hers because he may understand better because my mother has had lupus for as long as I can remember, and I did. That is the Doctor that said he wanted to wait a year and see where I am. I think the wait is because I know some family members of people with Lupus can have positive ana, but yet he diagnosed me with raynauds, which from what I read is closely related to lupus. His son (my eye specialist) is sending me to a rheumatologist that specializes in chronic iritis and lupus, he said that he is sure that it is lupus but can only put the thought in my file till he dad gives diagnoses. I meet at least 6 of the lupus criteria, I know that this is what it is but I don't know if I should go back to my old doctor or stick it out with this new one, eventually I know either way I will have this diagnoses it just hard having people look to me like I'm lying, mostly my family but when a doctor looks at you like your lying it hurts too, the reason I was in the ER was because I had a spontaneous abortion, I hate the name because it sounds like I did something wrong, but the nurse practitioner at my doctors office ( who also says it Lupus) said they call it that over a miscarriage because my body got rid of it hence the word abortion, she said that I probably will have a hard time carring and that Lupus can cause that, so Im not even trying anymore, I was blessed with one, I'm grateful for that, but I can still picture the Dr.'s face at the ER when I said I may have lupus, it was like "ok you crazy person", I just want my diagnoses back so I don't have to say I think, I can so I know.

 
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Old 04-25-2013, 10:15 AM   #6
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Re: Long year

Hi. It's not just about wanting to know, it's about becoming eligible for treatment! I think that's the part others don't understand while we're in watch & wait mode.

Raynaud's can be seen with other conditions, all by itself, or with lupus. My mom didn't have lupus---at least she was never dx'ed. I suspect she had antiphospholipid syndrome, though, and she did take Coumadin for the last 30years of her life. Her Raynaud's was the classic red, white & blue kind, but I think people can "do" any or all of the colors.

As for meeting criteria: no doctor ever said this to me point-blank, but I bet some must "weigh more" in doctor's minds. For example, arthritis is seen in many conditions; ANA is positive in quite a few rheumatological and other conditions; and I think serositis and pleuritis are seen elsewhere as well. So I bet the "trick" is meeting one or more that's always---or almost always---seen ONLY in lupus. Anti-ds-DNA or anti-Sm scream lupus, for example. (I tested positive for anti-Ro, which confused my local doctors greatly.) It was my recurrent rash that finally sealed the deal for me: it was proven to be lupus-specific by deep-punch biopsy with immunofluorescent stain tests, else I'd probably still be looking for answers!

I hope you get more clarity soon---and that something can be done for your eyes. Is your vision affected? With one pupil looking larger, was stroke investigated? And given your miscarriage, was antiphospholipid tested for? (There's a sticky post on APS that you could read; the stickies are above the user threads.) Hang in there! Bye for now, Vee

 
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Old 04-25-2013, 07:16 PM   #7
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Re: Long year

Hi again,
I'm glad to say that it has only badly effected one eye, though I have to have steroid shots and drops in both. the different sized pupils are caused by the iritis itself and so was the cataract, my doctor tried to fix it when he got the cataract out but it is still "stuck", so one eye is always the same size and never moves, it's a conversation piece, one huge pupil and one tiny, as for my site I still have one good eye so I'm grateful for that. Thank you so much for the information and concerns.

 
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