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Discussion Starter #1
hello.

i'm new as well. kind of contemplating options. been sick for a few years now. after a toxic exposure. i think it's lupus. lots of drama. asthma. ibs. strange issues. twitching. feeling old and achey. perpetually sick. hospitalized a few months ago for severe hepatitis. tested positive for hep a, mono, ana, c3 and c3 were low, ch50 low. nobody checked the ana result until 5 months later, unfortunately. mishap. i'm starting to question the hep a diagnosis. as after a thorough investigation the health dept was not able to determine where i could have caught it. still testing positive for mono many months later. and ana. doctors being very strange. keep passing me around in a queue. each one adding a new little thing to the list. i'm growing tired of the song and dance. want to get some answers. i'm wondering if it's time to collect my test results and get another opinion.
 

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Hello and Welcome here.
Is one of the Docs. you are seeing a Rheumatologist?
Are you in the UK.
Sounds to me like you have had a rotten time.
x Lola
 

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hi. thanks for answering!

well, initially i saw a rheumatologist. and my ana was neg but my ch50 was low. then 3 weeks later i was hospitalized for what they thought was multiple infections. but come to find out 5 months later might not have been. since i was officially diagnosed with hepatitis a, i'm wondering if it is just more complicated to get them to take back a bad diagnosis than it would be to just go somewhere for another opinion. i haven't seen a rheumatologist since they discovered my ana test was positive.
 

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I can understand what you are saying about starting over. I reached the stage where the local Consultants were worse than useless and I ended up not wasting any more effort on them but going to London rather than be fobbed off again
x Lola
 

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Discussion Starter #5
that pretty much sounds like where i'm at. except i'm in the us. i think my test results are pretty straightforward. and i meet the criteria. it's just that they messed up so bad the first time that they're still trying to wrap their heads around the situation that could possibly explain the diagnosis they've given.

or as you british would say, they have their heads stuck up their arse :)
 

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Shame you aren't here. I know my Consultant would help you.
I am sure some of the US girls will give you good advice though.
Assuming it is Lupus you may well feel a lot better in a few months time if you get medication. Meanwhile you at least need pain relief.
x Lola
 

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HI,

Sorry you are unwell:(, and nice to meet you.

Firstly, from what you write, it seems a very good plan indeed to go get a second opinion, and also to have a copy of your notes and blood tests.

Which specialists were you seeing in hospital?

Why do you not believe the Hepatitis A diagnosis? Presumable you have had blood tests to prove that you have Hep A? It is a serious illness and very normal for someone who has it to feel generally very unwell for a long time afterwards.

What toxin were you exposed to?

Being ANA postive does not automatically mean you have lupus. Having epstein baar infection, or hepatitis can also result in a positive ANA. Do you know the titre or pattern?

What ever is wrong with you, there IS something obviously wrong. And it is serious enough to be damaging your liver. So you are absolutely right to keep pursuing it until it is correctly diagnosed.

It may be worth seeing an immunologist or infectious diseases specialist.

Good luck, and let us know how you are getting on.

X C X
 

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Discussion Starter #8
that's interesting about the ebv, hep a, ana thing. i wonder how/if that would affect the complements. very interesting indeed. i saw every specialist known to man in the hospital. actually, they initially sent me because they thought i had some sort of infection in my blood (also based on some definitive blood test). but then they decided that they made a mistake. which made me suspicious of the next conclusion that didn't seem to make sense at the time. i suppose i can't blame it entirely on my doctors. i clearly have an unusual and complicated case. but i'm getting impatient with all the to and fro.

but i do have other chronic issues. achiness, fatigue, sores in my mouth, twitching, blotchy face rash that comes and goes, and weird hot spots in my body that feel external but aren't, perpetually on the verge of being sick, suddenly allergic to all kinds of bizarre things, sore throat, swollen glands, etc. plus the asthma and ibs. these were all ongoing for a few years prior to the liver malfunction.
 

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I would also be gathering all bloodtest results, doctor's notes and going for a second opinion. Look through/search the Find a Doctor forum to see if a doctor recommendation has already been made for someone nearby. If no one has posted on that area yet, feel free to ask if anyone has any recommendations. It really is imperative to find a great rheumatologist, especially for diagnosis in the beginning when you're having trouble.

There are a lot of possibilities for you, but lupus really does seem quite reasonable from what you describe. Definitely need to see another rheumatologist or go back to the first one if you felt he/she was reasonably good but just didn't have much to go on back then.

Good luck & I hope you will stay in touch and let us know how it goes.
 

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Discussion Starter #10
Maia;531151 said:
I would also be gathering all bloodtest results, doctor's notes and going for a second opinion. Look through/search the Find a Doctor forum to see if a doctor recommendation has already been made for someone nearby. If no one has posted on that area yet, feel free to ask if anyone has any recommendations. It really is imperative to find a great rheumatologist, especially for diagnosis in the beginning when you're having trouble.

There are a lot of possibilities for you, but lupus really does seem quite reasonable from what you describe. Definitely need to see another rheumatologist or go back to the first one if you felt he/she was reasonably good but just didn't have much to go on back then.

Good luck & I hope you will stay in touch and let us know how it goes.
thank you! i saw in another thread that you were from rochester. which is ironic because i was thinking of going to the mayo. which i've heard good things about. though people seem to think it's hit or miss on here. which is good to know.

i'm in the process of gathering my records now. there are quite a lot of them though. too many to physically take with me. so i guess i'm just trying to figure out which would be the most pertinent for now. i know that all of my doctors suspect lupus. because they all say that. but the landscape is clouded by the other issues and test results. so people seem perplexed in general. so i'm hoping to avoid the newbie residents that clog the halls of the mayo :)
 

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Hi fallin,
It sounds as if things have really been ruff for you and i am so sorry. I would say that you need a rheumy for sure. I would want to have the hep a test again just to be on the safe side. It never hurts to be safe right.
Tammy
 

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Discussion Starter #12
i don't know why that never occured to me. but that's a good idea. if it came up positive again, it would be really interesting. esp since i'm still testing positive for mono and they determined that i definitely don't have it.
 
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