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toomanyoars
@toomanyoars

Posts: 22
Joined: Sep 06, 2018

Lupus or not Lupus?

Posted by @toomanyoars, Thu, Oct 25 8:23am

8 years with either wild goose chases, no tests and it’s stress or tons of expensive tests and we don’t know. Consistently they look for Lupus. I had 3 years of ANA positive results then switched doctors (insurance reasons) to end up with a new doc and new labs that show ANA negitive every time. So then obviously no lupus, right? Now 7 months of fever…still ANA negitive they think maybe lupus was the right diagnosis but until it shows positive they run more tests. Epstein Barr, Cytomegalovirus, Thyroid panels, etc. I have a fibromyalgia diagnosis but so many other symptoms don’t fit so I am in a constant loop and feeling worse every day and more frustrated. I am not sure what to do next. Another doc, another lab, give up and quit trying to find out why I am so sick?

REPLY

Hello @toomanyoars, welcome to Connect. I love your profile picture! I'm sorry you're having to go through a bunch of hoops without much of an answer or diagnosis. There is another active discussion on Lupus tha you might want to read through here on Connect.

Groups > Autoimmune Diseases > Tumid Lupus with SLE Symptoms?
https://connect.mayoclinic.org/discussion/tumid-lupus-with-sle-symptoms/

You might also find the following sites helpful:

Lupus Research Alliance – Diagnosis & Treatment
https://www.lupusresearch.org/understanding-lupus/diagnosis-and-treatment/

Good site that speaks to lab tests for autoimmune disorders, by illness. Its not meant to dwell on, just a good reference.
https://labtestsonline.org/understanding/conditions/autoimmune/

@toomanyoars have you thought about getting a second opinion?

I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: https://www.mayoclinic.org/appointments

John

@johnbishop

Hello @toomanyoars, welcome to Connect. I love your profile picture! I'm sorry you're having to go through a bunch of hoops without much of an answer or diagnosis. There is another active discussion on Lupus tha you might want to read through here on Connect.

Groups > Autoimmune Diseases > Tumid Lupus with SLE Symptoms?
https://connect.mayoclinic.org/discussion/tumid-lupus-with-sle-symptoms/

You might also find the following sites helpful:

Lupus Research Alliance – Diagnosis & Treatment
https://www.lupusresearch.org/understanding-lupus/diagnosis-and-treatment/

Good site that speaks to lab tests for autoimmune disorders, by illness. Its not meant to dwell on, just a good reference.
https://labtestsonline.org/understanding/conditions/autoimmune/

@toomanyoars have you thought about getting a second opinion?

I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: https://www.mayoclinic.org/appointments

John

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Thank you so much.

My name is Beryl……Oh boy so many of us go through the hoop backwards , but you have come to the right place where people understand….And will have good ideas on how to take control and feel better about your situation …..feel for you , best of luck Beryl…..look forward to seeing your progress …..

Hi. I'm new to this site and read your post. Immediately, I could see everything you went through as exactly what I went through so wanted to tell you what the result was for me. I, too tested on and off for positive ANA. So, Doctors did not consider lupus (SLE) for many years. I had almost every symptom of systemic lupus but the Doctors argued that I could not have lupus with a negative ANA. One day I decided to attend a lupus support group and listening to the members, I was convinced I had lupus. Finally, my new Therapist heard me out and suggested I see his good friend, who happened to be considered the very best Rheumatologist in Atlanta, GA. He was able to get an appointment for me with Dr Gary Myerson. Dr Myerson examined me and said he was pretty certain I did indeed have lupus. He explained that although most Doctors use ANA as their most frequent screening test for lupus, many patients NEVER test positive for ANA, even though they have lupus! He ordered a more specific (and more expensive) test called "double-stranded anti-DNA autobodies" test and the results showed high titers for systemic lupus. After ten years of going from Doctor to Doctor, never finding an answer, and having been called a hypocondriac by one, I finally had the correct diagnosis and was put on Plaquenil which, after about six months had me feeling much better, less fatigued, and reduced the malar, or "butterfly rash" on my face. I am very grateful to this Rheumatologist as I believe he saved me from permanent kidney damage and other possible complications of lupus. Just three years ago I lost a good friend, who passed away at 58 years of age from Systemic Lupus. Call me blessed.

@djanthony

Hi. I'm new to this site and read your post. Immediately, I could see everything you went through as exactly what I went through so wanted to tell you what the result was for me. I, too tested on and off for positive ANA. So, Doctors did not consider lupus (SLE) for many years. I had almost every symptom of systemic lupus but the Doctors argued that I could not have lupus with a negative ANA. One day I decided to attend a lupus support group and listening to the members, I was convinced I had lupus. Finally, my new Therapist heard me out and suggested I see his good friend, who happened to be considered the very best Rheumatologist in Atlanta, GA. He was able to get an appointment for me with Dr Gary Myerson. Dr Myerson examined me and said he was pretty certain I did indeed have lupus. He explained that although most Doctors use ANA as their most frequent screening test for lupus, many patients NEVER test positive for ANA, even though they have lupus! He ordered a more specific (and more expensive) test called "double-stranded anti-DNA autobodies" test and the results showed high titers for systemic lupus. After ten years of going from Doctor to Doctor, never finding an answer, and having been called a hypocondriac by one, I finally had the correct diagnosis and was put on Plaquenil which, after about six months had me feeling much better, less fatigued, and reduced the malar, or "butterfly rash" on my face. I am very grateful to this Rheumatologist as I believe he saved me from permanent kidney damage and other possible complications of lupus. Just three years ago I lost a good friend, who passed away at 58 years of age from Systemic Lupus. Call me blessed.

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Thank you! After awhile I think you start questioning if it's all in your head but your body keeps telling you over and over something is really wrong. My endocrinologist, the day after I posted that basically threw her hands up and said ok, yes there is something more to this that we weren't finding and gave me a referral to a rheumtologist at KU medical center who specializes in some of the more 'obscure' autoimmune. I will discuss that test with them. Thank you for suggesting that, but also for reminding me I am not alone in this.

@djanthony

Hi. I'm new to this site and read your post. Immediately, I could see everything you went through as exactly what I went through so wanted to tell you what the result was for me. I, too tested on and off for positive ANA. So, Doctors did not consider lupus (SLE) for many years. I had almost every symptom of systemic lupus but the Doctors argued that I could not have lupus with a negative ANA. One day I decided to attend a lupus support group and listening to the members, I was convinced I had lupus. Finally, my new Therapist heard me out and suggested I see his good friend, who happened to be considered the very best Rheumatologist in Atlanta, GA. He was able to get an appointment for me with Dr Gary Myerson. Dr Myerson examined me and said he was pretty certain I did indeed have lupus. He explained that although most Doctors use ANA as their most frequent screening test for lupus, many patients NEVER test positive for ANA, even though they have lupus! He ordered a more specific (and more expensive) test called "double-stranded anti-DNA autobodies" test and the results showed high titers for systemic lupus. After ten years of going from Doctor to Doctor, never finding an answer, and having been called a hypocondriac by one, I finally had the correct diagnosis and was put on Plaquenil which, after about six months had me feeling much better, less fatigued, and reduced the malar, or "butterfly rash" on my face. I am very grateful to this Rheumatologist as I believe he saved me from permanent kidney damage and other possible complications of lupus. Just three years ago I lost a good friend, who passed away at 58 years of age from Systemic Lupus. Call me blessed.

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Hello @djanthony, welcome to Connect. Thank you for posting what you found to help you and alerting others with similar symptoms.

Hi @toomanyoars,

I'd sincerely encourage you to view these other discussions on Connect, where you will meet @mcgke91 @nikohl7 @pattym @anniemaggie @peabody88 @seanlroop and many others who've shared their frustrations and challenges associated with diagnosing lupus or other autoimmune conditions:

– Lung Nodule, D-Dimer elevation and ANA +VE https://connect.mayoclinic.org/discussion/lung-nodule-d-dimer-elevation-and-ana-ve/
– Blood Tests & Diagnosis https://connect.mayoclinic.org/discussion/blood-tests-diagnosis/
– Multiple autoimmune diseases https://connect.mayoclinic.org/discussion/multiple-autoimmune-diseases/

Will you let us know about your progress and any updates once you meet with the rheumatologist? I look forward to hearing from you.

Update: I gambled..not a huge one but it has caused me more pain and went off all my supplements. I wanted to see if without "supplementation" when I went in to see the doc what my blood tests would show. I had been on high vitamin D and B12 for years. When I got the tests back, I was ANA positive. ( I discovered later that D can change your labs for ANA), low B12 (pernicious anemia) which I have had for 20 years, low RBC, hemoglobin, hemocrit, high platelets,high protein, low potassium, agap, BUN, egfr, sodium, D and thyroid peroidase, and high FSH. So at least now we have "purer" lab results to go by. However my Endo decided with the ANA she wanted to send me to a more knowledgeable rheumatologist about 2 hours away from me in a month or so but first she wanted to check the two thyroid nodules I have. I ha e had them for a decade, have been tiny and had two biopsies and never an issue. Now one has grown in a matter of months 10 times the size it was but still no T3 or T4 labs to indicate a thyroid issue so she wants another biopsy done. Still sick, still struggling, and not sure on my course right now just trying not to worry and putting as much of my fear in God's hands as I can.

@kanaazpereira

Hi @toomanyoars,

I'd sincerely encourage you to view these other discussions on Connect, where you will meet @mcgke91 @nikohl7 @pattym @anniemaggie @peabody88 @seanlroop and many others who've shared their frustrations and challenges associated with diagnosing lupus or other autoimmune conditions:

– Lung Nodule, D-Dimer elevation and ANA +VE https://connect.mayoclinic.org/discussion/lung-nodule-d-dimer-elevation-and-ana-ve/
– Blood Tests & Diagnosis https://connect.mayoclinic.org/discussion/blood-tests-diagnosis/
– Multiple autoimmune diseases https://connect.mayoclinic.org/discussion/multiple-autoimmune-diseases/

Will you let us know about your progress and any updates once you meet with the rheumatologist? I look forward to hearing from you.

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Thank you!

All my ANA tests were positive. They would see the butterfly rash and order tests, then tell me positive. One Dr was very rude. So googled it and about 15 yrs ago found a lesser known test called anti-sm also called anti-smith, only shows up in lupus. I tested positive 3 times, Dr said don't worry it's not active. Then last several yrs tested neg, was told those numbers go up and down. Had friend who almost died a few times, spent off and on in hospital for 1 yr, every doctor gave a completely different disease, everyone different! After a yr he checked out of hospital went home, we don't know if he's in pain or not, but I found what it was also last Dr said same thing, friend said no more tests.

@anniemaggie

All my ANA tests were positive. They would see the butterfly rash and order tests, then tell me positive. One Dr was very rude. So googled it and about 15 yrs ago found a lesser known test called anti-sm also called anti-smith, only shows up in lupus. I tested positive 3 times, Dr said don't worry it's not active. Then last several yrs tested neg, was told those numbers go up and down. Had friend who almost died a few times, spent off and on in hospital for 1 yr, every doctor gave a completely different disease, everyone different! After a yr he checked out of hospital went home, we don't know if he's in pain or not, but I found what it was also last Dr said same thing, friend said no more tests.

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Thank you. Funny how stress is such a big trigger but this process is more stress than anyone should ever have. I'm have been there..no more tests. Couldn't handle another diagnosis another bill another doctor saying it's stress or lupus or fibro or cancer or any number of other things. Some have been mean, others just toss their hands up. But I am still trying. Maybe too little too late. I will ask the doc about that test. Who knows..might narrow things down.

I struggled with a diagnosis, too, until I was told (and it makes sense to me now) that it doesn't matter which auto-immune disease I have….all they can do is treat the symptoms. I was told Lupus, then Sjogren's, polymyalgia rheumatica, myocarditis, fibromyalgia…on and on. Putting a name to it doesn't change it. No matter which auto-immune you have, the solution is the same….treat the symptoms. My symptoms have varied from alopecia, joint pain, muscle pain, psoriasis, terrible rashes, heart attacks, on and on. Each time I get symptoms, I get treated for the symptoms (it is usually prednisone, but I've also tried things like Humira and Embrol). We're all different, and what works for one person doesn't work for the masses. Good luck on your journey!

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