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?!!

I completely agree with you on all points...i feel pretty certain from all the things I've read on the net (thanks for the link, btw), that the positive dsdna test is a good indicator that I've got Lupus...I even told my rheumy this...I think he agrees with me, but because my arthritis is so mild (relatively speaking, doesn't 'feel' mild) he hasn't wanted to prescribe anything for it nor put a label on it as he thinks it'll scare me...Also, the fact that the ANA test was only positive using the ELISA method also makes him suspicious...There was even a time when I had the butterfly rash...It only lasted a couple of nights, though, so I couldn't 'prove' it to him...I've even taken photos of my fingers when they've been swollen, but it doesn't slide...Lately, my joints have been much better...Not sure if it's the prednisone, or thymothymectomy, or luck...but they've been much better...I've also had a rash on my arms and legs since I was very young, and that's gone away too...My skin's pretty pale look but my complexion isn't as 'ruddy.'

About the thyroid antibodies, I know that some time down the road my thyroid will become either over or underactive, just a matter of how long it'll take for the damage to occur...My mom and aunt both have hashimotos...

I actually picked up a pamphlet while I was in the hospital to refresh me on Lupus...I think that I WILL contact an organization...

In the mean time, I think that I will definately take your advice re. the stomach acid (infections thread)...I'm taking acidopholous and eating lots of plain yoghurt, but I agree that in the acid depot., there's a problem...Maybe that'll help with this autoantibodies/lack of antibodies problem!

Thanks a lot, Annie!

Don't ever underestimate arthritis. Someone may label it as "mild" but even a mild case of arthritis is busy attacking your joints!!! It is an inflammatory, destructive process. My cousin just had to have knee replacement on both knees due to that.

Look up Lyprinol. It's a more "natural" alternative to anti-inflammatory meds. And if you take those drugs like Ibuprofen, etc., you need to have those omega 3's. Again, talk to a doc first before taking anything.

Prednisone does what anti-inflammatory meds due but to a much stronger degree, so it's definitely the steroids.

Have you been tested for celiac? What did that rash on your arms and legs look like? Discoid lupus?

Geez, you sure have a lot going on. Get a VERY good doctor!

The rash looked like tiny little pimples the size of the head of a needle...Almost like hives, but extremely tiny all over the tops of my arms and thighs...They weren't a very big deal at the time (I guess I got used to them after having 'em for like 15-years lol), but were a bit itchy...

I have been tested for Celiac's disease...My uncle has congenital celiac's, so when I was having digestive issues, the gastroenterologist checked my intestines for the damage, but there was none...To tell you the truth, I was almost disappointed when I found out I didn't have it....I was hoping that was the cause of the infections, joint pain, miriad of other health problems, that way, I could just stop eating gluten (even though gluten-containing foods are delectable and are basically everything!)...

I agree that there's a lot going on! The thing is, the docs. (up until this MG) never seemed to believe that I'm as sick as I am...I guess I look reasonably healthy to them (aside from being pretty pale)...Even when I was in the hospital, I sorta felt guilty because everyone was commenting on the fact that I didn't look sick...I felt like reaching my finger out, like ET, touching their finger and passing the feeling on for just a sec. (not to be mean, just to show the authenticity...lol), but only in the movies...lol

yeah, I gotta find a good doc....The one I have right now is mainly a walk-in clinic doctor who is chronically late and therefore rushes his appointments...It's really hard these days to find good GPs in Ontario...Blasted conservatives and their cut-backs...

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

Pepe, when my hair fell out like yours has, it did grow back. Not as full as it was, but it did grow back. The way I could tell was, about 3 weeks or so after the start of the fall out, I could feel tiny prickly stubbles when I lightly ran my finger across my scalp in the oppisite direction of growth. It may take less or more time depending on how fast your hair normally grows. It looked a little strange during the growing back period, but I was just so happy I really didn't care. I didn't use any of the new products that may help it to grow in faster. I don't think they were available back then. I know how devestated I felt when it happened to me, so I know how you feel. Try not to worry too much, it will grow back...it just takes time. Hope this helps.

Hugs,
Pat

Pat - Yes this helps a lot. Some people say it will, while others say it will not.
What was the reason for yours falling out? I'm happy for you that it did. It is very devastating to see and feel clumps of your hair coming out at a time. Very scary. Fortunately, I had a lot of hair to start with. I'm afraid to use any products as I hear conflicting reports, some people say it makes it worse in the beginning. I think I will stick with the biotin and pray. Your message did help. Thank you. Dorothy

Hi everyone, (sorry this is so long - I'm home alone and bored)!

Pat, your message made me smile because i am currently going through the "awkward" re-growing phase and it is SO annoying! I always had fine hair but a lot of it. I'm not sure if it is the pred, azathioprine, or my thyroid that caused me to lose hair, but it seems to have stopped. I remember one morning I showered and forgot to clean out the tub. My husband ran into the bedroom panicked after his shower and started to inspect my head sure he would find a huge bald patch based on the amount of hair he found in the bath!

I occasionally wear glasses and I lost a lot of hair around my ears where my glasses rubbed, so now I have silly tufts growing back. I joke that I look like one of those wishing trolls when I wake up! To make matters worse my hair is growing in curly and I have always had iron-board straight hair.

I'm not sure why I've stopped losing my hair but the new growth is about two inches long now. My hair dresser keeps assuring me it won't be long until it's all caught up with my actual hair! Phew!

Wishing you all luscious locks!!
~Kathy