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Valued Contributor
Posts: 747
Registered: ‎05-25-2016

Re: Is Lupus hard to diagnose?

I'm sure your friend's daughter has looked at resources on line. As far as information only, Mayo Clinic and Lupus Foundation of America are good informational sites. 

Like other a few other posters have said, she needs to see a specialist with a good reputation. 

There are a couple of tests that can point to lupus, but she needs a doctor to look at her entire history. 

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Respected Contributor
Posts: 4,703
Registered: ‎03-09-2010

Re: Is Lupus hard to diagnose?


@Nataliesgramma wrote:

A friends daughter (30's) started having health isssues and she is very fit.....runs and excersizes. Her hair started falling out and she got very tired when she went to the gym. Ran tests and treated her for fluid around her heart and said her hair falling out was a Thryroid problem.

 

When she wasn't getting much better....she went to another Dr who said she might have Lupus....The first Dr still tells her it is a Thyroid problem.

The second Dr wants to start her on meds for Lupus

 

Isn't there a test to determine exactly what she has?


@Nataliesgramma

I have Lupus. I was Dx with it a few years ago. Your friends daughter needs to see an nephrologist and an immunologist or rheumatologist.

She may want to read about the condition online. Somewhere like the Mayo clinic. 

Please have her see the proper doctors, Yesterday.

 

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Respected Contributor
Posts: 4,402
Registered: ‎09-18-2010

Re: Is Lupus hard to diagnose?

It was very difficult for my mother to get a diagnosis, she saw many drs, some said she had it, others insisted she did not. She eventually got better, I don't even remember all her symptoms as this was several years ago. I do recall she had the butterfly rash though. 

 

When I have had health issues that were undetermined and the local drs seemed to be clueless, I have gotten better results going to a diagnostic clinic. I would suggest this lady go to one of those.

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Esteemed Contributor
Posts: 6,668
Registered: ‎03-09-2010

Re: Is Lupus hard to diagnose?

[ Edited ]

Lupus is the great imitator, which many diseases can fall under its umbrella.  The RA factor I am told is among the first ones used in diagnostic procedures but it is not always a sure tool.

 

Thyroid disease is an autoimmune disease but can also be secondary to the autoimmune disease of lupus. 

 

I am not sure what drug the doctor started her on but some of these drugs for the autoimmune system can treat other entities, i.e., for MS (I got a drug normally used for AIDS and leukemia) that had not treated successfully either AIDS or leukemia for which it had been used, in trials I was willing to take, and at the same time, I believe Annette Funicello was offered but refused same drug. 

 

It worked for me.  It did not work for everyone but with prayer and drugs, faith and good doctors, I am walking and my vision is pretty good.

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Registered: ‎03-09-2010

Re: Is Lupus hard to diagnose?


@SilleeMee wrote:

It is difficult to diagnose. But there is a basic screening blood test, ANA (anti-nuclear antibody). If that is positive then another kind of test is done to further differentiate a cause. That test is called AVISE and it can help confirm if someone has lupus or another similar AI condition.  AVISE is often used prior to treating the symptoms of lupus.

 

ETA - The AVISE test was released in 2016. So it's relatively new. 


Yes, indeed and then next the RA factor but you are right, ANA is a great start, AVISE and then RA factor. 

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Posts: 6,668
Registered: ‎03-09-2010

Re: Is Lupus hard to diagnose?


@Hoovermom wrote:

She needs to see a hematologist who can find out these answers.  I know from experience.


Hematologists normally treat blood dyscrasias.  I think she should see a rheumatologist, endocrinologist and immunologist.  

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Posts: 20,657
Registered: ‎05-22-2016

Re: Is Lupus hard to diagnose?

Much of the diagnostic clinical medicine is done in the lab where the blood tests are done. It's in the lab where diagnosis usually starts and it's where doctors and other clinicians get their data to confirm states of illness. Hematologists and immunologists, both those inside the lab and out, are included in the diagnostic procedure. No one particular medical professional can do the entire diagnostic procedure...it takes a team.

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Registered: ‎07-19-2013

Re: Is Lupus hard to diagnose?

HEMATOLOGIST - she needs to find one, STAT!

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Posts: 10,930
Registered: ‎07-09-2011

Re: Is Lupus hard to diagnose?

Immunologists would be my first choice.

"Animals are not my whole world, but they have made my world whole" ~ Roger Caras
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Respected Contributor
Posts: 4,703
Registered: ‎03-09-2010

Re: Is Lupus hard to diagnose?


@SilleeMee wrote:

It is difficult to diagnose. But there is a basic screening blood test, ANA (anti-nuclear antibody). If that is positive then another kind of test is done to further differentiate a cause. That test is called AVISE and it can help confirm if someone has lupus or another similar AI condition.  AVISE is often used prior to treating the symptoms of lupus.

 

ETA - The AVISE test was released in 2016. So it's relatively new. 


@SilleeMee

I have a blood test every 3or4 months. I believe this is the test I get. I also have a complete CBC and a urine test.

 

When I was dx had to have a kidney needle biopsy and a muscle biopsy. I had all types of scans and blood work.

I hope this young woman has excellent insurance. The cost of care does not come cheap.