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

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

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...

Thank you. Has being on the synthroid helped you? I hope mine is thyroid and not lupus. Do you have a lot of fatigue also? I'm sorry you had such a poor Rhematologist. Does the hair come back. I am trying biotin now. Thanks for your help.

Thanks for the words of encouragment. The two tests my primary did that she said indicates lupus are ANA which was positive and antinuclear antibodies which was high. The rest of the testing she said was up to the Rhematologist. So you don't actual know if you have lupus or not either? I hope you will go back to the Rhem. Also I hope you are feeling well. Thanks again. Dorothy

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