Hello from Lisa
I have symptoms that my counselor and gyno both believe are Lupus. My rheumatologist will not make a diagnosis because I do not test on blood work. I wanted to join the forum to see if that is common --- not to have blood work to help in diagnosis. My rheumatologist told me today he didn't need to see me again. I feel lost!
Good Morning, Lisa. Welcome to WHL! What you are going through is so very common! I am actually in the same boat as you are. Many times we suffer for years before we get a diagnosis. I was diagnosed with SCLE Lupus but even though I have sooooo many symptoms of SLE Lupus my bloodwork doesn't give the proof they are looking for.
Please make yourself at home and read some of the old threads. I learned so much when I first came here and it was such a relief to find people that felt like I do! I am sure you will. This is a wonderful group of people and we are glad to have you with us!
I was considering going to my aunt's house in Magnolia, near Houston, TX. Is there one doctor I should try to get an appointment with? I thank you for you encouragement.
Funny you mention that. I actually went to a doctor over there for awhile. Great doctor but the one thing that I have learned from all of this is that you have to go to the best if you are ever going to have a shot at getting an answer. I now make the drive to The Medical Center in downtown Houston. Although I still have no answer I now have a team of people working on me. Each one can see the records from the other and they don't mess around. The first neuro appointment and rhumey appointment each lasted over an hour! Before that I was lucky to get 15 minutes from a doc.
I go to the UT Physicians building and Hermann Hospital. Fee free to message me and I will be glad to give you my doctors names!
I'd say keep going until you get some answers. It does take a while for doctors to diagnose Lupus since the symptoms varries from person to person. I don't know about you but an answer is something you can work with and learn what to do. When you are in limbo you don't know where to turn. Good luck finding a good doctor. I think they are few and far between. Welcome to the forum. People here sure do understand where you are because they have walked down the same path. Hope you get a good one and answers soon. Billie
Hi Lisa, all I can say is, don't give up!!
When my fingers started to swell, a specialist thought it was scarlet fever.
He tested me for it, together with ANA.
Results showed negative for scarlet fever but positive for ANA (not borderline, it is "elevated").
My others joints were starting to ache big time and yes, he totally ignored my ANA + result and sent me home with MOBIC!!
I had to do a lot of research and internet, eventually, I found and matched my symptoms to lupus.
We are lucky to have internet these days, so, Lisa, do more research and see if you have other lupus symptoms that you may have overlooked.
Knowledge is POWER
Good Luck my dear!
Nice to have you on the site.
Like yourself and i've put this in a few threads now and even my own, i've had constant problems and was never diagnosed until last year seeing my specialist for my skin and told him i thought i had chilblains, he took a couple of looks at me and told me i had Raynauds it's pure madness how they don't want to look no furthur than a problem you go with, it gets me so angry how people like yourself and other's have to suffer, when the problems are facing them yet that intend to ignore it when it's so serious.
All the best Lisa and hoping they can help you more. Terri x
You've been given great information and advice from our members. Unfortunately, what you are going through is not uncommon. It is very frustrating and demeaning, but not uncommon.
Exactly what lab tests did your doctor's say were negative for Lupus? You have a right to have a copy of your lab tests and their results. Perhaps if we knew which ones were run, we might be able to assist you a little more. As other members have mentioned, there are some lab results that can be negative and you still can have the disease (and vice versa).
Don't give up and don't allow doctors to dismiss you. Your symptoms are very real and should not be ignored. Insist that they continue to test you until you have answers. As for the rheumatologist who says he does not need to see you anymore, you would NOT want him as your doctor if you were diagnosed. Seek another, more competent, rheumatologist; one who is willing to find out exactly what is going on with you and willing to treat you accordingly.
I wish you the very best...we are here to help you in any way that we can.
Peace and Blessings
THX Saysusie. My tests were ANA and SSA which neither values were given. And Sed Rate was 30.
As I mentioned before, it is possible to have negative tests and still have the disease (or some form of an auto-immune disease). A negative ANA does not preclude one from having Lupus. The SSA ( also called anti-Ro) test is an autoantibody test that can be associated with systemic lupus (SLE) or Sjogren's Disease. Having a negative SSA also does not preclude one from having Lupus.
The ANA test is ordered to help screen for autoimmune disorders and is most often used as one of many tests to help diagnose Lupus. Doctors must also take into account your symptoms and, depending on the symptoms you display, ANA may be ordered along with one or more other auto-antibody tests. These tests includes tests to determine if inflammation is present, such as: erythrocyte sedimentation rate (ESR) and/or the C-reactive Protein (CRP) test. Please remember that the ANA may must be used, in conjunction with other tests and symptoms, before a diagnosis is confirmed or rejected.
So, if ANA (and other tests) are negative, but you still display symptoms, Doctor's are supposed to do further testing to find out what is (and is not) going on!!
I wish you the very best...do not give up, we are here to help you as much as we can.
Peace and Blessings