Both my C3 and C4 run low. My C3 is 70 (should be 83-193) so it is just a little low. It has been down to 56 before. My C4 is 7 (should be 15-57). The lowest my C4 has been is 6. My rheumatology...
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...
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...
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...
Hopefully you can get some rest now that the holidays are over. Is you fur baby a dog or a cat? How old? I have two small dogs, ages almost 5 and almost 2....
Good thoughts, thank you, Sarah. Yes, my husband is going with me....
My rheumatatologist referred me to Mayo Clinic to see if my symptoms are due to CNS lupus. I guess CNS lupus is rare and requires different treatment. Many of my symptoms could be just regular lupus....
Christmas tip if you have enough storage space. I have a table top Christmas tree. I wired on the ornaments and decorations so they won't fall off. I had a friend who is really good at decorating...
Barbara, I feel so bad for you! It is crazy your husband and daughter aren't taking responsibility for things like taking down the tree, running to buy collapsible coolers, taking your daughter to...
It may take time. I've had lupus symptoms for at least 6 years but this fall is the first time my ANA came back positive. About 18 months ago my white blood cell count started dropping. I don't know...
Thank you Joy and Donna. My nose is closer to normal now but I still have a bulbous tip that I did not have in the past. I don't know why it swelled up over night last week then receded back down....
It could be rosacea or other skin condition. A dermatologist seems like a good starting point to me. You didn't mention your other symptoms but the first step to see if it is lupus is to get an ANA...
95% of people with lupus have a high ANA blood test. If your doctor hasn't done this test, you might want to request it. A high ANA doesn't necessarily mean you have lupus, but it is a starting point....
I know this sounds weird, but has anyone had their nose swell at the tip? My nose looks like I hot glued a ball to the end. I have never gotten the butterfly rash although sometimes I get a blush...
I have wondered about that too. I am a breast cancer survivor. I had a bilateral mastectomy with reconstruction. They used silicon implants with the reconstruction. I got the implants at age 49. I'm...
Thanks, Lynnwood. Don't spend time looking anything up. I was curious what others had experienced. I need to learn to be patient as my rheumatologist seems to be a good one that is working hard to...
Anyone have CNS lupus? If so, did it show up in MRI or spinal tap tests? My rheumy said my symptoms are consistent with CNS Lupus, but that CNS Lupus is really rare. Rheumy is going to consult with...
I think I'm ready to give in and hire help. I hate to waste the money but I can't do it and my house is disgusting! I'm one of those people who used to keep a nice clean house. *sigh*...
Thank you!...
Anybody know what this means on spinal tap (CFS) results? GRAM SMEAR: RARE WBC'S SEEN...
It is such a relief to find others that understand!...
Two months is a very long time when you are that miserable. Good luck tomorrow!...
I get lost driving as well - very weird and scary feeling. I can't drive now due to seizures anyway... Who should order the neuropschy testing - the neurologist or the rheumotologist? Or does it...
I think many of us are a little unsure of ourselves and a little sensitive when nothing is found on medical tests because we've been told for years "you are just depressed", "pull yourself up by your...
My spinal tap results were clean (no autoimmune auto-bodies in the fluid). YEA!!! It seems weird, though... I have so many symptoms of CNS lupus but my cat scan, MRI and spinal tap were all normal....
Lynnwood, you project a HUGE positive influence on this site. You are always quick to uplift others even though you are also suffering. Other people can't understand like we do - vent away whenever...
I hope you had a nice birthday!...
My heart goes out to you. Hugs and warm wishes going your way. Kim...
My spinal tap went well. Now I'm waiting for results. They said lupus antibodies in the spinal tap fluid test takes two weeks - ugh. I hate waiting!...
Ask to be put on a cancellation waiting list for the rheumatologist. Maybe you can get in earlier. Tell the scheduler why you want to get in earlier and he/she will most likely try very hard to get...
Mzanonymousone, I hope you get relief from symptoms soon. I'm sorry you are going this this trial!...
My generation (I'm 55) grew up without fluoride in the water so I have a mouthful of fillings. They are all from my childhood as I haven't had a cavity since I was 10 or so. I'm just now getting...
I think I'm getting a spinal tap because I'm having seizures. I have all the other CNS Lupus symptoms (mental fog, memory loss, difficulty speaking, balance issues, tingling, itching, headaches,...
I have a spinal tap scheduled on Dec 1st -EEK!!! Anyone have one of these and how did it go?...
Good to know, thank you Joy!...
My B-12 level was actually high and I don't take a B-12 supplement, but not so high the doctor was concerned. I do have trouble sleeping......
Will Pacquenil also help with mental fog and memory?...
Thank you, everyone for your help and kind words....
I will start Pacquenil after my next appointment (December 16). My rheumatologist wanted me to get an eye exam before starting the med. My eyes are healthy so should be starting Pacquenil soon. I...
I will definitely try the meal replacement drink. I am so weary of being tired all the time....
My biggest lupus complaint is fatigue but I've noticed that many days I start feeling better in the evening. Has anyone else noticed fatigue gets a little better later in the day? I'm still tired,...
Joy, how long did it take you to win your SSDI case? Was it a horrible ordeal?...
Thank you, Leesha....
Thank you, Barbara! I think this waiting is the hard part. I'm a Cancer survivor as well. Waiting on that diagnosis was difficult also. Once the diagnosis came through I had something to fight. I was...
Very good advice. Thank you, Joy....
I have been referred to a rheumy, but have not had my first appointment yet. It seems like forever before I can get answers so I am obsessing over lab results trying to figure it out myself. My...
I do not have any sage advice but I am so very sorry you are having so much pain and suffering....
I WAS terrified when I had the seizure because I'm a breast cancer survivor and didn't know I had any auto-immune issues. Until tests came back clean I was sure my cancer had metastasized to my brain...
I'm so sorry this is happening to you. I'm not the best one to reply because I'm still in the diagnostic stage (I have 4 of the 11 diagnostic symptoms including 1:320 ANA) but I just found out about...
I'm just starting down this auto-immune road as I just found out my ANA was high. I'm wondering if I do get diagnosed with lupus and get on lupus meds; will I get relief from the headaches? What...