Have no idea what I have but Dr keeps checking for lupus

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Regular Member

Date Joined Oct 2012
Total Posts : 23
   Posted 10/10/2012 6:15 PM (GMT -6)   
Hi.  I'm 39...being treated for fibro for about 1.5 yrs. Lately having severe flare of symptoms and new symptoms.  Rheumy checked for lyme (positive but ID dr said negative) and RA, thyroid, lupus, and whatever else.  TSH was normal but 2 wks later ended up in ER for tachy and TSH was 5.1,,, next day was .619(?????). RF is neg. ANA neg. HAve butterfly rash (mild), migraines, eye pain, rapid heart, swolloen hands, joint pain, unbalance, neuro issues..forgetting words, unable to speak clearly at times, cant get out complete thought befor it leaves my brain and the most debilitating fatigue (i get so mad at that) and so much more but cant articulate it correctly right now. I'm on elavil for fibro which I don't think is doing nything.  I hav ebeen in ER 2X's in 6 mos for either migraines type headache (more of a vibration) and tachycardia/chest pain.  I get different answers from all of thse dr's.  It's soo beyond ridiculous what we go through trying to get diagnosed.  I understand it's not the label that going to solve anything but it would give me a sense of understanding and completeness that I know can at least be treated. 
My question is basically how long did it take for you to get diagnosed? Dis you jump through hoops lik ethis?  My husband has no patience and little understanding of why it's taking so many appointments and so many prescriptions and yet still have no answers.  I defend it all but I am just as frustrated.

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 10/10/2012 7:00 PM (GMT -6)   
Hi welcome to our forum, I am sorry that you are ill tho. You will find a lot of great people here and we all understand how things go when having lupus.

To answer your question, I had a Dr mention lupus to me in 1987, but wasn't officially diagnosed until June 2001. Lupus is the disease of a 1,000 faces. It can be very hard to DX. Sometimes Dr's are reluctant to DX you and put it in or medical records. The important thing, is that they acknowledge your issues and treat you. It can be very very frustrating waiting a DX.

I can say from my own personal experience, I truly believe the reason I am so sick now, is because I was never treated durning those years of waiting. It is also common for some of us to go 3 or 4 different Rheumy's. If you feel that you aren't getting anywhere with your Rheumy it may be time to see someone else.

Sorry your hubby isn't understanding. Does he go to your appointments with you? If not it may help if he spoke with your Dr direct.

Welcome again, and ask any questions, or come and vent. We are a great group that supports each other. Good luck and I hope you get some answers soon.


Regular Member

Date Joined Oct 2012
Total Posts : 87
   Posted 10/13/2012 12:33 PM (GMT -6)   
I would take your symptoms to a lyme literate doctor. Infectious disease drs don't usually believe in chronic lyme. There are many great members on the lyme board that can help with any questions you may have. Good luck with everything!

Regular Member

Date Joined Oct 2012
Total Posts : 97
   Posted 10/18/2012 11:36 AM (GMT -6)   
Im 18 years old and i understand i only got diagnosed 4 months ago when i was 17 my doctors would never listen i was in A&E 5 times in 3 months all they did was send me home with codeine until one day my eyes rolled back into my head and i stopped breathing id had a seizure finally i got all these diffeernet tests done and finally i was diagnosed with lupus My symptoms consisted of: Butterfly rash, Joint and muscle pain, tachicardic and chest pain (LIKE A BELT WAS ROUND MY CHEST), vomiting, high bp and temp, severe weight loss (lost a stone in a month). Doctors never listen i was insisting on going private but money is tight at home il say i got lucky but you really do have to speak up its your health and you have right to know id left it quite some time i already had small leakage of protein from kidney and an occuring blood clot around the lung (all under control now) its scary but im just getting to grips with it hope this helps....

Veteran Member

Date Joined Mar 2010
Total Posts : 638
   Posted 10/19/2012 11:18 PM (GMT -6)   

Please please see a Lyme doc. Not many people test positive on Lyme tests and it may be very very possible that you have Lyme disease. I don't normally look on the lupus forum but hit the wrong forum on my iPhone while trying to get to the Lyme forum and saw your post. Good luck to you.

Veteran Member

Date Joined Sep 2012
Total Posts : 511
   Posted 10/24/2012 9:52 AM (GMT -6)   
Yes yes yes to seeing a Lyme literate doctor! There is a wonderful group of people in the Lyme forum. Be sure to check it out.

There is a video called "Under Our Skin" that is very informative and can better explain the importance of seeing a Lyme literate doctor.

I am in the same situation, a had a positive then negative Lyme test and now my Rheumy is suggesting Lupus.

I am at my rheumy's office today and I plan to ask for my Lyme test results in order to get a second opinion from an LLMD.

I can also relate to the husband issues. I'm in the same boat. Thinking of you and hoping you too can find some answers.

Best wishes and keep us posted!

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