[angelschick6]

I have been so frustrated trying to figure out what is wrong with me - Docs seem to think I'm making it up. Finally found a good Doc but he has referred me out. I have many joints (mostly back, hips) that keep me from my life most days. I have had to quit working. I have a positive ANA, speckled 1:40 in June, 1:80 in July but all antibodies are negative (Anti-DNA,SSA,SSB,RNP) No anemia, not elevated Sed rate . I do have hashimotos which could cause the positive ANA. I have had this odd rash under my chin for years and now I have the classic malar rash - Doc saw it today and it is made bright by just a minute in the sun. My Doc says it is a lupus rash but has referred me to a rheumy Doc for this Friday. My question - is it possible to have lupus and all but the ANA blood tests be negative?
Thanks for any info
Amy

 

[sam101360]

Hi Amy:

Sorry you are having such a rough go of it. You have found the right place, everyone here is just great!

As to your questions, the answer is yes, however admitedly rare. I am one example of a complete serum negative lupus sufferer. I was DX via a skin biopsy and symptoms. I have only had one positive ANA all others like yours are negative.

I have had an occasional low C3 and C4 and my CPK's are elevated when i flare, my sed rate is usually between 9 and 29...so nothing too outstanding.

I now have an added DX of RA or as my rhumy says Rupus (Lupus RA crossover).

Don't give up hope a good rhumy is all you need.

Good Luck - Stephanie

 

[angelschick6]

Stephanie,
Thanks for the support. Where did they do the skin biopsy? I mean - what part of your body? Would a skin biopsy get me a definite DX of lupus if my rash is indeed lupus related?
Amy

 

[Maia]

A skin biopsy has proven very helpful for a number of our members in getting the right diagnosis of lupus, but even with a biopsy it can be negative for lupus but you still have lupus. Definitely go to the rheumy this Friday, and relay all symptoms present and past, as well as any family history of autoimmune disease. There are a number of different rheumatological diseases it could be...

My only positive antibodies are ANA (high level though) and anti-cardiolipin. Yet I was diagnosed with lupus on basis of that bloodwork alone as well as my symptoms which are similar to yours (malar rash, sun-sensitive rash on arms, joint pain, long term low grade fever with flu like feelings/aches/pains/fatigue, etc.).

One thing that does set you apart from many lupus patients is that you report back involvement - that is pretty rare in lupus. It usually spares the back but clearly you have something going on and hopefully the rheumy can figure it all out. Good luck on Friday and I hope you report back to us!

 

[sam101360]

My biopsy was done on a ring like rash that appeared on my upper arm, it was positive for lupus, the dermotologist then did two more skin punches, one on another rash and one on my inner thigh where I had no rash. Both of these came back positive.

For me that was the first step on my journey.

I hope this helps.

Stephanie

 

[angelschick6]

Well that was a waste of most of my day. The Rhuemy said he can't say I have Lupus - my ANA is too low and my rash too light - but he also can't say I do not have lupus - I have many symptoms and my rash does look like lupus. Whatever! I am so frustrated!! No clue what I am supposed to do now. He offered to take more X-Rays of my hand - I have X-Rays from 2 weeks ago why spend more money? He suggested PT - been there done that - it hurt not helped. Called my GP who is a gem to let him know the meds are not working and this guy was no help - left message. We shall see where to go from here. I guess I just have to get sicker for a Doc to see what I feel? Thanks for your help!

 

[jellyjazz]

Just letting you know that it IS possible to have lupus and normal bloods...its unusual but it happens-im one of them! If i wasnt treated then i know the lupus could be out of control. I'm lucky to have a rheumy who knows what to look for - she diagnosed pretty quickly, i did on the other hand have many of the physical symtoms which made it quite obvious to her that it was lupus. So yes it can happen so keep pushing for answers!

 

[cath]

Hi Amy,

Hang in there. Most rheumatologists won't diagnose anyone on their first visit. They usually want to wait and see how your symptoms and bloods develop. At least he didn't dismiss you out right. He said you might have lupus, but wasn't sure yet.

Do you have a follow up appointment? Or did he say you could get back in touch with him for new symptoms?

Did he check your urine? And BP?

Did he offer you an anti inflamatory to help with the pain? It is reasonalbe to wait a (short) time if he is unsure if you have a conncetive tissue disease before starting treatment, but in the mean time you should at least have a pain killer - preferably a NSAID.

Read up about lupus, so that you are allert if new problems arise. Keep out of the sun, get more rest, and do try to keep active as well.

You do need to be 'followed' - so if this rheumy never wants to see you again, you need to find another one, but if he is happy to see you again, I'd reccomend sticking with him and going back again when/if
- you develop new symptom(s)
- in 3-6 months time if nothing changes (ie you aren't better, but also not worse).

Feel free to ask questions here

X C X

 

[angelschick6]

I am seeing him again in a month to review the X-Rays. I am taking Indomethacin (50 mg 2x a day) right now but it doesn't do much - nothing does really. He did run a UA and my BP is fine - mine is usually 120/70ish. I wasn't so much looking for a diagnosis today - I was honestly hoping maybe there was a blood test not ran or something else he could check concrete to get me closer to some answers. This just reminds me so much of when my thyroid went bad. I spent 3 years with a variety of symptoms, they wanted to do a hysterectomy, gained 50 pounds in 6 months while eating air cause I was too tired, carpel tunnel surgery and have me on antidepressants. All because my TSH was "normal" at 3. When I finally got them to run the Hashimotos antibody test, it was 13,000!! Instead of multiple sugeries, all I needed was two, stinky little pills every morning and all those symptoms were gone. So, I guess it's just bringing up old wounds and I am frustrated. I have a life to live. I have a husband and 6 kiddos who need a non-hurt Mama :-( Thanks for letting me vent!!

 

[Clare.T]

Hello Amy

I can understand your feelings given the thyroid story!

I am wondering if all the blood tests have in fact been done, for example complement and tests for antiphospholipid antibodies.
Your q about skin biopsies - biopsies can be from affected skin from unaffected but exposed skin, such as inner forearm, and from unaffected unexposed skin such as buttock or stomach. The likelihood of showing positive decreases in each case. Facial biopsies are often avided for cosmetic reasons but in fact they heal fast or so I have read. I had one of mine taken from just under my chin. However lupus just might not show up even from affected skin.
The main thing is to know if the doctor thinks you do have some autoimmune connective tissue disease. Even after diagnosis, treatment takes several months to kick in and it might take much longer to find the right mix of meds to control the disease. People usually need to use NSAIDs or even Prednisone meanwhile
If a second opinion is an option, go for it, especially if this rheumy is not a lupus expert.

All the best
Clare