Pepe, A positive ANA is not specific for lupus. I'm glad you are being sent to a rheumatologist. They can run the lupus specific antibody tests and look at all of your symptoms to make sure (or did they run those?).

I hope you don't have lupus but if you do, it is manageable. I've known a lot of people with lupus (volunteered for 10 yrs. to the local foundation). It's like MG, it can be mild or worse. It's different for everyone.

Try not to put the cart before the horse. I know it's hard to wait for answers. And it does really suck to have more than one AI disease (I have 2).

Just hang in there and take care of yourself. Pamper yourself!!!!!

Annie

Annie:

Thank you. No they did not run the specific Lupus antibody tests. She said I need to see the Rheum. She did tell me that an ANA is positive in 90% of Lupus patients. You are right, it is hard to wait. Thanks for the words of encouragement.

Thanks again!

I have had similar happenings to what you're talking about. I was diagnosed with MG in 2006, have been on large does of synthroid (.175) for low thyroid for quite some time and had a positive ANA test. I had been seeing a rheumatologist for possible lupus in addition to my neuro for MG. I'm embarrassed to say I haven't been back to him in over a year because I didn't think very much of him. One visit he would say that he thinks I have lupus and another visit that he didn't think I did and next time back to lupus. I got frustrated and stopped going. From what I understand, Lupus is difficult to diagnosis. It's not just about reading lab work. My general practice doctor (who is fantastic!) told me that rheumatologists tended to be "numbers" people and more black and white. (I apologize if that offends anyone).

Anyway, I don't think it's an easy answer, so hang in there. I also have the thin hair thing going on and very little body hair. I have had some problems with the redness/rash on cheeks.

Take care,

Hey there! I too had a Lupus scare a while back, fortunately it was negative. I am praying YOU get the same results!

AS for the hair loss, there is a fabulous product out there called Nyoxin (sp?) that people who are undergoing chemo use to gorw back hair. They even sell it at Walmart or Target. Apparently, as long as there is a hair follicle there, you CAN regrow hair. I'm going to get it for my mom as she is going bald from Alopecia.

Hang in there and let us know if there is anything we can do to help!

Big hugs!
ERin

Erin,

Hi! Thanks for your response and also for the suggestion for the hair loss! I will definitely try it. I'm sure you can relate, since being diagnosed with MG (2years) I feel like I have no control over my body and I used to be VERY active. One of the things I have always been blessed with is great hair, not to sound to full of myself. I have terrible nails. Anyway, seeing my hair fall out in clumps and realizing my pony tail is half the size it used to be is so stressful. I am trying Biotin, but just started and realize it will take several months. Sorry to ramble, but having MG we all have a common bond. Thanks SO much for your help. I am very glad that your Lupus scare was negative. Dorothy

Hey hon! No problem! I can totally relate! I was always so proud of being thin, and now I look like a beached whale! I don't like pictures taken of me b/c I get so depressed. Apparently in my family, men can gain weight - no big deal - but if women gain weight, it's the end of the world!

I USED to be small (0-4) but am now a 10-14 and it is so depressing. I got rid of all of my skinny clothes b/c they were just taking up space in my closet. Granted, I will take being bigger ANYDAY over not being able to swallow, but I wonder why it has to be a toss-up?

My hubby has been GREAT! He tells me all the time how beautiful I am but others aren't quite so kind.

The lack of control due to MG drives me crazy as well! For a type A personality like me, it is horrific, but I have learned to stop and smell the roses.....

Take care!
Erin

Nicky, Maybe this will help explain the dsDNA issue.

http://www.pubmedcentral.nih.gov/art...?artid=1065341

It is still a very specific test for lupus, along with the "11" criteria that doctors use.

When someone with lupus is in a "flare" of the disease, often similar stressors that make MG worse but particularly exposure to the sun, the antibodies can increase. After seeing so many people with lupus, I would never call it mild. It's a nasty disease that has a mind of its own and can attack anywhere at anytime in the body. I wouldn't wish it on anyone.

Thyroid antibodies, for example, can be very high but you may have a normal TSH until there is enough damage to the thyroid (antibody attack of it). That situation has to be watched closely too, just like lupus.

A positive ANA can occur in lots of autoimmune diseases. Again, it's not specific to any one of them but indicates that the immune system is "active."

Just like neuros, not all rheumies are created equally. It's a great idea to contact a local lupus foundation for a referral to a rheumatologist who has a good reputation.

Annie

Erin, Whomever would judge you on your "size" needs to walk a day in your shoes. Your personality and kindness outshines any kind of size you may be. I don't think it should be a trade-off either. Why can't they alter Pred to keep it from making people larger?!!

Erin:

Sounds like you have a wonderful husband and really that's all that matters. Not what all those other people say. I was on prednisone and gained 20lbs as soon as I stopped the prednisone the weight started to come off. It took a few months but it eventually all came off. I too am a type A personality, so I can also relate. Thanks, Erin.
Dorothy

Thank you. Do you think this could be my thyroid? Would a thyroid problem cause a positive ANA? I'm sorry that you had such a bad Rheumatologist. Do you also suffer with a lot of fatigue? I appreciate your response.

Hi there,

I too am being monitored for Lupus as I have a positive ANA test--but, my levels are quite low and I was only positive on one of the tests that they use (which apparently, isn't very reliable...why they use it at all, I don't know..lol)...I was tested for Lupus about 5-years ago as I was having joint pains everywhere...5-years later, I still have the joint pains, but guess what? They're not as bad! I haven't seen my rheumy lately because of all this MG stuff that started in the last year, but I'm planning on seeing him again since my thymectomy to see where my antibodies are at...Do you know if any of the other Lupus serological tests were positive? Anti-ds DNA, antiphospholipid, etc? My ds dna antibodies are extremely high, over 200, which is a worry, but since the ANA is low, I don't think it's too bad (maybe?). I also have antithyroid antibodies as well, but normal thyroid levels...

Anyway, even if it IS Lupus causing your hairloss, Lupus is very strange...It can be extremely mild and/or limited to one or two areas of the body, which is annoying, mind you, but at least you'll be comforted in knowing that it doesn't necessarilly 'progress.'

Anyway, here's hoping that whatever's causing the aching and hairloss gets fixed soon!

Nicky