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Old 06-09-2009, 12:32 AM   #1
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Uncertain....

5yrs ago, I experienced my 3rd miscarriage and was referred to a Rhumie for a complete work up to determine the cause. I tested positive on the ANA and was diagnosed with lupus, I was also told that I have thrombosis. I exhibit many symptoms that are related to lupus as well. Recently, I had my 4th miscarriage and repeated blood work that indicated that I was ANA negative.

It is my understanding that I can be positive for one test (flare up) and be negative for the next (dormant) but my Dr. who is absolutely fabulous, advised that I DO NOT have lupus. However, he has referred me to a rhumie here in VA but I have not had the money to see anyone yet because I lost my insurance when i was laid off.

I am frustrated and up in arms because I don't know what my next step should be..... Any suggestions?

I feel like I am having a flare up, but I also have fibromyalgia and the symptoms are very similar.....

 
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Old 06-09-2009, 07:08 AM   #2
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Re: Uncertain....

33 and Tired, hi & welcome. I'm sorry about your continuing troubles---so very difficult...

Have you seen the "sticky posts" at the top of the thread list? They contain info on how lupus is Dx'ed; also about antiphospholipid syndrome (APS), a blood clotting disorder that occurs with lupus but can also occasionally (I think) occur "standalone". I'm only a patient, but with your history of recurrent miscarriages, I think you'd want to read up on APS, not just lupus.

Speaking of reading: most libraries have lupus hardcovers. One excellent rheumie/author is Dr. Daniel Wallace, and a second is Dr. Robert Lahita.

When you look at the *bloodwork* criteria for systemic lupus, you'll see listed one threshold test (ANA), plus several *more specific* blood tests (anti-DNA, anti-Sm, antiphospholipid, lupus anticoagulant, etc.) Like you, I've read that certain ones rise & fall with flares, but I'm not sure which (sorry).

Do you know which diagnostic criteria you met five years ago? I was told that once you meet a criterion, consider it permanent, as if checked off in indelible ink (per my rheumie, major teaching hosp. in major Eastern city). With your difficult medical history, in your shoes I'd really want to see a rheumie. Maybe the rheumie your dr. recommended would agree to accept reduced payment &/or work out a slow payment schedule? And maybe your dr. could help you get your foot in the door?

But, again, I'm just a (dumb) patient, so please take the above in that light. I hope you keep posting: many nice people here, with lots to share. Bye for now, with my best wishes, Vee

 
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Old 06-09-2009, 08:03 AM   #3
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Re: Uncertain....

VeeJ~ Thanks! I am not sure what all was involved in my work up when I was orig dx, I have submitted a req. from that office in CO to resend my results that detail all of the numbers. I heard that too, once you are dx, it never goes away.

My Dr. is great working w/ my Fibro, but as so many practices/phys. - No one takes me seriously when I tell them I have Lupus, because they say I am too 'young' (loose term! ) and quickly dismiss my concerns and ignore my requests for a course of treatment - which is odd because I am in the prime target age for the disease, hmmm....

I did have one live birth, my daughter, Faith. She was born with CHD, and she also had a extremely rare immune deficiency (DiGeorge Syndrome - Q22 Deletion) sadly & ultimately resulting in death. To me, her condition (knowing what I know now) sounds eerily similar to Lupus, and my instincts have always tugged at the thought that her disease may have possibly been misdiagnosed and wonder if she too had this retched disease.... they never checked for Lupus because I wasn't dx until 6mo after her death.

I will post a f/u after I get more info. You are the best!

 
Old 06-09-2009, 01:22 PM   #4
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Re: Uncertain....

hi there 33 & tired - you stole my name! kidding! but i sure feel you on that!
i am so sorry to hear that you have been thru sooo very much! you are one strong person! i admire you!
AAAAAAAAARRRRRRRRGGGGGHHHHH! to young to have lupus - that is a first for me! how do 12 year olds have it then? makes me angry when these 'educated' ppl give us such blah answers!
i agree with vee bringing up APS - worth looking into!
are there any out-patient clinics? teacing hospitals? rheuny is definitely the first doc on the list - some ppl start with an inetrnist/specialist physician if there other issues (gastro, neuro etc) but a rheumy is the go to doc for lupus
... and i do not think that they can 'change' there minds about the dx - if you meet the criteria then you meet the criteria ... simple!
hang tight & keep posting!

just an add-on - there is a specific antibody that results in neo natal lupus (Anti RO i think - so if you test positive then it may just be?)

Last edited by Angel MJ; 06-09-2009 at 01:24 PM.

 
Old 06-10-2009, 08:33 AM   #5
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Re: Uncertain....

AngelMJ ~ I will check in to that.... I have heard of the Anti RO - I will look into that.Yeah, sometimes I think the Dr.'s come up with these responses like 'you are too young' because it helps them sleep at night! they don't want to do the leg work to help you, even though you PAY for their services and get treated like you are out of your mind and it's almost like they don't want to admit there is a REAL disease out there and it is becoming MORE AND MORE common and it is heart breaking, really.

Do you realize that 1 in every 4 children born, is diagnosed with SOME FORM of heart disease or immune deficiency??? 1 IN 4 ---- That is NOT O.K.!

We are here and we won't give up!!!

Last edited by Administrator; 06-12-2009 at 08:40 PM. Reason: inappropriate comment

 
Old 06-10-2009, 09:27 AM   #6
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Re: Uncertain....

hi again - you are so right! it is not okay


i am convinced that the 'food' we eat is to blame - processed, hormone injected, poison ladden food! i cannot afford to shop organic so i am gearing up to grow my own!
hang in there and get a good doctor! one that actually has a clue!
Ang

Last edited by Administrator; 06-12-2009 at 08:41 PM. Reason: inappropriate comments

 
Old 06-10-2009, 12:12 PM   #7
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Re: Uncertain....

Wow... good luck on the garden.... I am clueless and do NOT have a green thumb so I would probably starve! LOL.

Take a shower.... hmmm - interesting theory but has anyone bothered to mention the small fact that if that worked, there would be no illness in the world and we would not need chat room forums?????

It helps being here. I am practically obsessed and on here whenever I am not asleep..... my hands hurt all the time, I just hope that all this typing won't make my fingers fall off

 
Old 06-10-2009, 01:49 PM   #8
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Re: Uncertain....

we are in the throws of winter and i have bacteria running rampant in my body (again) just nursed hubby thru his tracheitis (fever broke yesterday) i think i pushed myself to hard now i have lung, throat sinus infection and he is playing nursie ... told him i would get him better & show him how to do care for someone then it will be is turn

the only thing that keeps me off the board is if my negativity comes thru in my writing - i try to only be kind & offer support!

fingers falling off - try not let that happen! mine ache but my little friends (pain meds) help with that.
i too love the boards as it gives me a place to go where ppl truely understand and dont feel the need to feel sorry for you ... there are a lot of ppl going thru so much worse and they keep fighting! hope & inspiration!

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Old 06-10-2009, 02:56 PM   #9
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Re: Uncertain....

Howdy! I understand your frustrations.... that is for sure! I get hot headed too but my hubbie is the one that gets to see that side of me

Last edited by Administrator; 06-12-2009 at 08:43 PM.

 
Old 06-10-2009, 08:41 PM   #10
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Re: Uncertain....

The longer you have lupus the easier it will be for you to recognize the difference between both of them. Survivor here of both for almost 20 years. I had found out when I had a miscarriage when I was 6 months pregnant. I was + for APLS. I since was treated with aspirin and when preg. with my middle child, I lost his twin at 3 months along. I went on to have my daughter as well with many complications. If asked if I would do it again, yes. Esp with the last, I almost gave my life for her. Try to see your rheumy.

 
Old 06-11-2009, 11:02 AM   #11
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Re: Uncertain....

Do you think it is possible for us to have successful pregnancies, and healthy children? After 4 I am skeptical but don't want t0 give up hope.

 
Old 06-11-2009, 01:48 PM   #12
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Re: Uncertain....

Quote:
Originally Posted by 33 and Tired View Post
Do you think it is possible for us to have successful pregnancies, and healthy children? After 4 I am skeptical but don't want t0 give up hope.
Oh course. Although you will have to be followed by a specially trained high risk OB/gyn. I have three.

 
Old 06-11-2009, 04:15 PM   #13
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Smile Re: Uncertain....

Hiya 33 & Tired,


As Veej has already mentioned APS, I too think you must and need to be tested for it, especially with your history of miscarriage. APS/sticky blood can also cause other problems but would definitely give you the answer you need I think regarding pregnancy.

There are treatments that are then possible to enable you get pregnant and also to hopefully help you to carry the baby full term. Here in the UK there are some dedicated clinics to help with pregnancy in lupus with ladies who have APS set up by Dr. Graham Hughes who discovered the problems with APS and pregnancy. This is why it is also called Hughes Syndrome - I am giving you this information so that if a doctor calls APS by another name you will be prepared and know what he/she is referring to.

The first step is to be tested for it and then you should be referred to a clinic that is primarily for pregnancy in lupus. This can be sorted out if your doctors test you positive for it.

Please go and ask about this. I too know the complete heartbreak of losing babies because of APS. I will keep you in my thoughts.

Take care,

goldenwings
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Last edited by Administrator; 06-12-2009 at 08:44 PM. Reason: don't comment on other people's opinions for any reason

 
Old 06-11-2009, 11:27 PM   #14
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Re: Uncertain....

Thank you all SO much! I would be lost without this place!

 
Old 06-12-2009, 03:44 AM   #15
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Re: Uncertain....

i believe that there is a reason for everything ... and a reason we all found this message board!

there is absolutely no reason to abandon hope of have a child except if it is a decision you have made!

hiya GW - hope you doing okay!

 
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