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mayte

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 #31 
Hello everyone,

Well, I made it to my first rheumatologist appointment yesterday afternoon.  He informed me that I have fibromyalgia along with arthritis.  He said I didn't meet 4 of the 11 criteria for the classification of Lupus.  Not completed satisfied with his diagnosis.  He didn't do any further testing.  I brought him my history of blood work for a 6 year period that showed a positive DNA and dsANA along with a high Sed Rate and c-creatine positive, indicating some sort of auto-immune disease but he told me basically that if those are not high enough even if they are positive, he will not test any further. So he rules out Lupus! Something does not feel right!!!  I am just looking for the proper diagnoses. I am afraid that he missed something... and since I don't have the malar rash either, he dismissed me and sent me home with a script (amitriplyine) Evalil which is a pill that treats depression, pain, insomnia and anxiety.  I don't get it. Looking for a second opinion. I don't want to have Lupus, I know it is a terrible disease but I also don't want to be misdiagnosed.

Thank you for reading this post.  I am just so concerned.     
Cakelady

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 #32 
May look for a doctor that has lupus patients. Not all rhemys have lupus patients. Also please keep in mind that there are about 60-80 different AI's out there that mimic lupus. It's one of the reasons lupus is hard to dx. There isn't anyone test that says you have lupus.

Keep a note book of all your symtoms and if you do get the rash take a picture of it.


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mayte

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 #33 
Thank you, Cakelady.  Yes... I am writing down all my symptoms and keeping a journal.  I know that there are so many auto-immune diseases... That is why I was concerned when he dismissed them and said it was fibromyalgia.  He is a well-known Rheumatologist who specializes in Lupus and who has been in practice for over 25 years.  He was so quick to say it wasn't Lupus...just by a quick physical examination...no urine test or further testing to confirm the disease.  

Cakelady

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 #34 
He more then likely did not order any more test because there is not a test that they can do that says you have lupus. It can take years to get a dx. For now the rhemy has dx you with Fibromyalgia which is a real diease and some of those symtoms can mimic lupus. Please be patient lupus is a war pick which battles you want to fight.
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UhOh

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 #35 
what was the dsdna titer # and did they check your "complement" ? C3 C4?
Get a second opinion.
mayte

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 #36 
Uhoh, I dont know those levels. Perhaps when I go for a second opinion they can investigate. Thank You!
Robinj

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 #37 
Mayte,

 Are you in a position to find another rheumatologist in your area that has lupus patients? Not sure where you are located, but in my case they are few and far between. 

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mayte

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 #38 
I live in Florida. I'm going to try to schedule an appointment with another rheumatologist from the Cleveland Clinic. Let's see how it goes....
Cakelady

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 #39 
That's good. We have a forum member from Florida. She has not ben on in a long time but I got the pleasure of meeting her when we were in Florida.

Beth went to the Cleveland clinic. I will text her to see who her doctor is. I am not sure how long it will take her to get back to me she's very busy. Anyway make an appointment thats your best bet.

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mayte

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 #40 
Thank you so much Cakelady....so very nice of you! :)
Cakelady

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 #41 
Not a problem. This forum is here for us to share our experiences and to help each other. No one knows what we go through on a daily bases. But for the forum people need to post and others need to respond. I know it's scary in the beginning and I did not post for along time but I am glad I changed my mind and started posting.

We also like to have a little fun :)




Note: Please excuse any misspelled works or grammar errors. I have CNS lupus and brain lesions and use a program to help me type

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mayte

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 #42 
Yes...you are so right Cakelady...and I am thankful to be part of this forum. ☺
whylupus

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 #43 
Mayte,
I go to Cleveland clinic in Ohio! I cannot say enough positive things about them. The Rheumotology at Cleveland is rated number three in the United States. I drive six hours to see my rheumatologist and it's so worth it! I see dr Howard Epstein. He is a man with few words but he listens very patiently to everything I want him to know! He explains everything to me and allows me to ask as many questions I want to ask. He has a message line that I can text him whenever I need and he calls me or text me everytime within fifteen minutes or has his nurse call me until he can get in touch! I was really ill once and texted him and he called from vacation. I can also see my labs as they are completed and he always text me what they mean so I don't have to wait for my next four month appointment . He's been in practice for twenty eight years of rheumatology and specializes in lupus! He works very closely with my local specialty doctors and encourages them to call him when I'm having complications! He started me on treatment before my antibodies became positive due to my several symptoms and then all the diagnostic antibodies became positive after treatment was started! I strongly recommend him! I really believe that I'd be dead already if I wouldve kept playing around locally! My disease is very progressed and I have a lot of permanent damage to my organs due to being wrongfully diagnosed locally! I had 2 liters of blood in a pericardial effusion! My heart stopped and I had emergency heart surgery to drain the blood- they still didn't diagnose me and the pleural effusions fluid was positive for lupus?

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mayte

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 #44 
Thank you for taking your time to respond to my post Whylupus.  I am so sorry to hear that it took so long to get diagnosed but happy to know you found a great specialist even if you have to travel far.  You are right!  It is worth the drive!!!

It is a great comfort that your rheumatologist is one of the best and that he is available when you need him.  I am happy you found the right one!  It is very difficult to find one that has great knowledge and that listens to your concerns.

I was able to make an appointment with Dr. Hossam Elzawawy, a Rheumatologist who specializes in Lupus and is part of the Cleveland Clinic located in Weston, Florida about an hour away from me.  Fortunately, he takes my insurance.  I am hoping that he finds the proper diagnoses to treat this auto-immune disease I have because the other rheumatologist I saw this week, left me with a great deal of disappointment.

Again, thank you for your great advice!  I will keep you posted!  :-)






 
whylupus

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 #45 
I would guess that, the Cleveland clinic in Florida is operated under the same administration as the Ohio Cleveland clinic! They are an outstanding hospital! I'll be praying that God puts the right doctor over your care! Wishing u the best!
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