Hello All!

I hope you all are doing well! I thought my MG was improving although I have been having terrible fatigue and my hair has been falling out. I try not to be, but I am vain so this has been a terrible stress for me. Anyway, after 4 months of doctors not taking me serious, I finally got some bloodwork back, and now they are telling me I might have Lupus. I had a positive ANA??? Does this really mean Lupus??? So now I have MG, Pernious Anemia and perhaps Lupus. I could not get an appointment with the Rheumatologist for 2 weeks. I was just wondering if anyone else has had this experience or can offer all the valuable knowledge you have. As you can imagine, I am sooooo frustrated. I want to go back to work REALLY badly. I appreciate any input. Thank you

Years ago before giving me the MG Dx the Dr thought I had lupus but then said I didn't. I too have hair loss but we believe it is because of my thyroid {have underactive thyroid} I am now taking thyroid meds and the hair loss is getting better, still have hair coming out but nothing like before. Have you had your thyroid checked lately? The problem with us is that we all seem to get more and more symptoms and feel the Drs think we are "full" of it. I am at the point where I just don't say anything anymore because I am afraid the Dr might start the old "it's in your head" deal again LOL

Thank you for your response. I did have a thyroid panel. My antibodies were high, but everything else was normal. She said it could be my thyroid and we will recheck, but she said it could also be because of the positive ANA. Again, she referred me to the Rheumatologist. She tried to assure me that the Rheum. could sort it out. I just want to feel normal and have my hair stop falling out. Again, thank you for responding and listening to me vent.

Best regards

Hey Pepe,

I am so sorry this is happening to you on top of everything else you have been going through. Try not to get too stressed out until you see the Rhumy and he/she figures out what is going on. There is always a chance it was a false positive result. Do you have a rash, specifically on your face? Be sure to follow up on the lab work for the thyroid. I had a lot of hair loss due to a low thyroid and have been taking synthroid for many years. Even on the med I still have occasional fall out, just not as bad. Low thyroid also causes fatigue. I'm so glad you posted and you can vent anytime you like...we are always here for you. I will keep you in my thoughts & prayers. Please keep us posted. Take care.

Hugs,
Pat

Pat,

Thank you so much. I do not have a rash at all. The overwhelming fatigue, hair loss and some unusual pains. Certainly, the low thyroid would be the lesser of the two evils. I hope they figure it out soon. Thank you for your thoughts and prayers.

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

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.