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MimiSashimi

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 #1 
Hey everybody,
My PCP referred me to Mayo Clinic Rheumatology, and I had my first appointment today.
Although the doctor was super nice, he went through my blood work and mentioned everything that points away from SLE, and I just felt super stupid for even being there. My only two positives are SSA and ANA. My SED rate and RF are normal, even though my joints have never been in this much pain, and I am taking pain meds for it. I have history of unexplained rashes, major fatigue, and trouble keeping hands and feet warm (even have a heater on them during desert summer!).
He sent for more blood work, but really doubts I have SLE. He said he wasn't even sure why my PCP said he suspected it. I feel strongly that this is what it is, especially since I have taken immunosuppresants in the past with promising results.
He thinks I have fibromyalgia instead. I don't know much about it, so I am unsure. Waiting on test results. I have an appointment scheduled on Friday before we take the long drive back home...
I feel like this was a waste of time and money, and that I will never get an answer.
My family back home is eagerly awaiting the results of this trip, but I am so disappointed right now. I was hoping for some help, but I don't think anybody really takes me seriously because of pretty normal lab work.
Just need some encouragement to keep going.

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Cakelady

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 #2 
Ok first most rhemys don't dx you with lupus right off the bat. You have to have several appointments with them. And second I would be jumping up and down if he said I didn't have lupus not disappointed. Also fibromyalgia IS a real illness which at times causes more pain then lupus does

Lastly. There are between 60-80 different AI's out there that mimic lupus so it could be anything.


Good luck

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Dolphin

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 #3 
Hi, Mimi I'm  sry that happend to u. It is awfull to feel dismissed :(  I have been dismissed by 2 rheums so far, but all 3 of my other dr's all say its for sure an AI.  Why did they not think Sjogrens with + SSA ?  I'm going to to Mayo Clinic too. Which Mayo did u go to the AZ, MN or FL?  My concern is similar to urs that I will be dismissed do to labs when my clinical picture is very strong.  I show pic's of my sx's and it gets the non rheum's attention and make a list of all my sx's.
MimiSashimi

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 #4 
Cakelady, thank you for the response. I don't want to sound like I want lupus! I just want answers. Been going to doctors for 10 years now being told I have this or that, so was hoping going here would be...conclusive? But I know it's a hard journey, just frustrated, as I know many of us are. I know fibromyalgia is very real, and like I said, I have not read much on it, but I will definitely do that these coming days.

Dolphin, thank you. He did take an extensive list of symptoms. In conjunction with the blood work, we will see what happens next. I am at the one in Scottsdale, AZ. He said nothing about Sjogren's, but I thought about that as well. I do seem to get dry mouth a lot, but he asked me if my eyes are dry, and I can't tell right now due to them being pretty bad from my seasonal allergies, so I put drops in them for that, and am rubbing then constantly because they itch.

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Cakelady

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 #5 
Spend time reading the forum and you will see that it has taken some people close to if not 20 years to get a dx. Also most doctors treat the symtoms
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upstater

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 #6 
As others have said, it seems autoimmunity has lots of variants and is often difficult to pin down. I would think with a positive ANA (depending upon what you mean by positive) and a positive SSA there is evidence that something rheumatological is going on. Even if it can't yet be named or identified. That is often when a doctor will state that you have "undifferentiated connective tissue disease". And at that point they CAN treat the symptoms you may be having....often with plaquenil and prednisone (if needed). 

Read about UCTD here: https://www.hss.edu/conditions_undifferentiated-connective-tissue-disease-overview.asp

Also...plaquenil has protective or "disease sparing" properties. So, it could have an effect (positive) on any progression that could take place. Is also good for fatigue and rashes.

If you get a rash again, I would go to a dermatologist promptly and have a biopsy. The biopsy can tell you if the rash is related to lupus or an autoimmune process.
Cakelady

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 #7 
Go on to the LFA's main page and see what information they offer.

Also having a positive ANA does not mean you have lupus or any AI for that matter. Healthy people have positive ANA's. I have often said my ANA moves from positive to negative back to positive

One last thing I am all for getting a second opinion however if you go from one rhemy to another to another hoping for the answer you want you will not be taken seriously. Do research on the doctors you see make sure they have lupus patients not all rhemys have lupus patients nor do they know how to treat them. The one thing you don't want to get is a reputation for doctor hopping because then you WILL not get the help you truely need.

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MimiSashimi

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 #8 
No, I know a positive ANA can happen in healthy individuals and can vary. This is the first rheumy I am seeing as I cannot see when in my state because I think they are going through a complete overhaul, haha. It's a little crazy there now! I do frequently research on AI issues and such, to the point where I might freak myself out! I am happy to read up on fibromyalgia, though, and hopefully get help. :)

I appreciate the advice, Cake. :)

Edit: First rheumy, but bounced along many specialties. :P Guess since I've waited for a year to see a rheumy, I was pinning a lot of hope in it all, but I know that's not how it works. Just keeping my head up. :)

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When you go through deep waters, I will be with you.
Isaiah 43:2
RufusRick

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 #9 
ANA and SSA sounds more like a connective tissue disease than fibromyalgia, possibly Sjogren's.  That said, people with connective tissue diseases often also have fibromyalgia.  Dr. Daniel J. Wallace has written excellent books on SLE, Sjogren's, and Fibromyalgia.  They are "The Sjogren's Book," "The Lupus Book," and "Making Sense of Fibromyalgia."  If you read all of these, and I have, you will know things of which most MDs are unaware.  Be warned, that knowledge may be very frustrating when dealing with the medical community because they may question and dismiss what you believe because they weren't taught it in their education.

Here is a link to what I believe is some pretty illuminating information, it even has a diagnostic flow chart.  It gives an idea of what the antibody tests generally indicate.  It is by no means something to be used for a diagnosis, it just helps to see what these various tests generally indicate, an aid to diagnosis along with experience and clinical presentation, etc.

https://diagnosticpathology.biomedcentral.com/articles/10.1186/1746-1596-4-1
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