At Mayo

I am at Mayo now. I gotta say I'm terrified that I am, once again, going to be disappointed by a lack of medical/test results to support a firm diagnosis. Right now I have "Possible Lupus" and "blah blah blah does support lupus".

I know many of us are frustrated by lack of diagnosis, being told we are just depressed, being told we have chronic fatigue, being treated like we are hypochondriacs, etc...

On the other hand, I am a little freaked because they mentioned a paraneoplastic process cannot be ignored. I looked up the word and it means my breast cancer could be back and could be behind my symptoms. YIKES!!!!

ANYWAY.... I am praying I get accurately diagnosed and on appropriate meds - and that it is not cancer. I know lupus is bad, but I'd rather have lupus than stage 4 cancer!

I'll update when I know more.

Thanks for letting me ramble!

I am so upset!!!!

I am here at Mayo to determine if my lupus is CNS lupus or just regular lupus and all my tests are coming back normal! Even my ANA is negative - AARRGGGGG!!!!!!

So am I back to square one???

Previously I tested ANA 1:320 homogeneous but now it is negative.

My white blood cell counts are coming back in low but everything else is normal.

My sed rate is 2 so no infection.

Before my c3 and c4 tests were low but I don't know if Mayo is retesting those. If so the results haven't come back I yet.

I see the rheumotologist and neurologist tomorrow but I am very fearful I am going to spend all this money to be told I have nothing.

GAH!

Before they thought I had lupus because I had:
Positive ANA
Seizures
Hypocomplementemia (low c3, c4)
Arthralgia
Leukopenia
Lymphopenia
Neutropenia
Cognitive issues
Depression


Without a positive ANA I think they'll back off on the lupus diagnosis.

I did start Plaquenil in Devember. Could that cause the negative ANA?

Thanks for letting me freak out on you! Please let me know if others have had this happen. I feel sick to my stomach and don't think I'll sleep tonight.

My ANA went from positive to negative on plaquenil also. My rheumatologist said that can happen. I hope you get some answers. You are in the best hands. Try to get some sleep. Praying you get good news and lots of answers.

UPDATE

I'm back from Mayo but I have more questions than answers.

Using the Immunofluorescence ANA testing method I test positive 1:320 homogeneous. Using the ELISA ANA testing method I test ANA negative, most people with lupus test positive with both methods.

My low c3, low c4 usually means lupus but can be low with other autoimmune disorders.

My Monocytes, Leukocytes, and Neutrophils continue to test low.

My joint pain was determined to be osteoarthritis and not lupus related.

Lupus is not off the table as a possible diagnosis, but it is looking less likely.

One doctor thought I had Hashimoto's encephalopathy but the neurologist (specialist that would diagnose and treat such a disease) doesn't think so.

Most disquieting is that the neurologist seems to be leaning toward a paraneoplastic encephalopathic process (i.e. Cancer). Basically cancer fighting components in the immune system start attacking the brain, spinal cord, peripheral nerves... The tests results start picking up on the autoimmune system abnormalities before the cancer is discovered. Since I am a breast cancer survivor this scares me very much.

This explains better than I can. http://www.mayoclinic.org/diseases-conditions/paraneoplastic-syndromes/basics/definition/con-20028459

Bottom line is I have something autoimmune but it isn't narrowed down to a specific diagnosis yet. We are waiting on test results that take a week or longer. I may have more testing in the future.

I gotta say, I'm very frightened.

I know everyone on this site is suffering and doesn't need to hear me whine about other than lupus. However, I apppreciate being able to share my thoughts somewhere.

Thanks for letting me share.

When I first got sick I had a postive ANA and a low C4. After treatment my ANA was no longer positive however my C4 stayed low. Its very possible that the Plaq which is what I was on caused the neg ANA result. Keep us posted.

When I was dx with Lupus the hospital that took the blood test phoned my GP to tell her it was positive and they said they would see me in 2 months time to see how I was getting on. I was already taking azathioprine for the Crohn's disease and the hospital recommended gabapentin and oxycontin for the joint/muscle pain. Anyway when I went back the consultant told me tests were negative, when I said they had phoned my GP he said that was impossible. I asked to see the test results he had in front of him and he refused. My GP requested them 3 times and they refused each time. Consultant said there was nothing wrong and they refused to see me again. Outcome was that luckily I have a fantastic GP. She said she knows what the registrar told her and she spoke to the registrar afterwards and he said he couldn't talk to her again but that he had given her correct information. So officially I don't have a dx but it is in my medical records at the surgery and my GP looks after the Lupus as well and will look up anything about it she doesn't know.

The point I was trying to make in all that waffle. A dx is nice as sometimes we just want someone to tell us we are not going mad or making it up (yep, I thought I was going mad when it all started). Sometimes it's not that easy, with immune conditions tests aren't always conclusive. Hold on in there and hope that you get some answers soon and that it isn't what you fear the most.