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Another is it Lupus question?! Looking for moral support!
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mamatotwogirls posted:
Hi all,
Desperately seeking some guidance and advice. I have been dealing with what I thought was hormone issues for at least 9 yrs now (after I had my first baby). I have been fighting flare ups of SOMETHING since then. I can't seem to get a doctor to take me seriously. All flares seem to be hormone related (maybe sun). My main issue is something like fever blisters all over my lips sometimes constantly. After my second child I started getting a rash on my cheeks. It burns and itches and sometimes I have sores. The lips and cheeks are almost always together. I get impetigo often and sores in my nose. I have frequent bladder infections and pleurisy. I also get angioedema often (sudden itching and swelling) mainly on my ears and on my face. I also get flu like symptoms (body aches, low grade fever), but Dr. said it was because of fever blisters.

My Dr. tested my ANA and it came back barely positive which she said was cause of the fever blisters. But that is where it stopped. I have been told it may be an autoimmune response to Progesterone (because it seems to be related to my hormones and pregnancies).
How should I proceed? Do these symptoms sound like lupus?
Sorry so long and I really appreciate any advice or tips!
Erin
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lupylisa44 responded:
You might want to try seeing a dermatologist

Lupylisa
With love, with patience and with faith, we'll make our way.
 
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mamatotwogirls replied to lupylisa44's response:
I appreciate the response, but I am saddened that on a support group website this is the only response that I get. I have seen a dermatologist, an ob/gyn, and an internist. And I assumed that on a Lupus support website that you all would understand that you could see a million Dr.'s before one actually looks at you like a person and not a symptom. I have also been reading about people on this website that have been diagnosed with less symptoms than I have. I was looking for help with identifying symptoms that could lead to a diagnosis of Lupus or something else that has been making my life hell.
 
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lisaisweavebee replied to mamatotwogirls's response:
Hi,

I agree that this board is on life support - which is so sad as it use to be a thriving, interesting board with dozens of members who posted daily. Then the WebMd gods decided to change the format and took away a lot of the features that we used. The result was everyone left - only a small handful of us oldies are around. Many found other ways to stay in touch ( Facebook, email and so on).

For some unknown reason, the new members aren't interested in posting....oh, they will ask a question but seldom will they take the time to answer a question....hence the reason why only LupyLisa responded to your question. She and I have tried our best to keep this board going. We've pleaded with the old members to come back, but have been unsuccessful . And honestly, I'm tired of trying. I suspect LupyLisa feels the same way.

I will, however, try to answer your questions as I do remember what it was like trying to find answers in the beginning.

Yes, some of your symptoms sound like lupus, however, most symptoms of lupus can be caused by other illness as well. That's why it can be so difficult to diagnose and so frustrating!! Have you checked out the links listed on the side bar on this page? There you will find the criteria used in diagnosing lupus.

I believe LupyLisa 's response of seeing a rheumy is correct and your next step. Tell your PCP that you are concerned and would like to be evaluated by a rheumy. If your PCP has a problem with that, then it's time to get a new PCP !

If you have any specific questions, please feel free to ask and I will try to answer as best I can.

Sorry for the lack luster welcome from the board - hopefully it will get better.

Lisa

I only tell you this so
 
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lupylisa44 replied to mamatotwogirls's response:
I apologize for the terse response. I am usually pretty active on this board but lately it seems like I am talking to myself! I haven't been feeling very good myself and with Spring here I also have lots to do around the house and don't have as much time to devote to the board.

Lupus is different in everyone but it sounds like it is a possibilty. The fact that your ANA was positive (barely is still positive) warrants a second opinion. I suggest you find a good rheumatologist (there is a link to help find one on the right had side under helpful resources. There is also a bunch of jreally great info there.

Lupylisa
With love, with patience and with faith, we'll make our way.
 
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lisatru62 responded:
Just like anything patience is a virtue. This is especially true of lupus and a diagnosis. I had lupus symptoms for 15 years and only when I went to a dermatologist did anyone suspect anything autoimmune related. I've had one skin biopsy and one kidney biopsy to confine my diagnosis of discoid lupus and SLE. It can take a long time to get an answer when diagnosing lupus.

Since many people on this community board are also struggling with their illnesses I try and take a "lets see" attitude and don't expect immediate responses. I figure if everyone feels like I do I'm lucky to get any answer at all.

I try and check the board once or twice a week to see if there is any new updates or questions. This is the busy time of year for Moms with spring sports, the house and family vacations. Since many lupus sufferers are women it stands to reason most of us have taken on more than we can handle, hence the slow response. I also know I have very few answers, lupus is a slippery disease.

Keep at it and hopefully you will find a doctor who is on the ball. You must advocate for your own diagnosis regardless of what others say or don't say. Look how long it took for me to get diagnosed and I was a pain in the neck. They even sent me to therapy because they thought it was all in my head and I refused to go away.

Good luck.

Lisatru62


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