I just got more bloodwork back from my follow up appointment. My lems test were negative and so were my mg, however my achr modulating antibodies were 20. And normal is 0-20. I have never mounted antibodies to much ( my titers/antibodies for vaccines and illnesses I have for sure had are always negative). So I was curious If or what that could mean?

They are doing repetitive stim in a week. But I am on ivig so I don't know if that will affect that test

Anyone know anything about this, or anyone had a positive one of these, and if so how positive was it? I just don't know if it could be a hint at a diagnosis or not!?

My recent modulating antibodies were at 41, and on my test it showed that anything above 25 is positive. I'm not sure if the test you took has the same parameters as mine though. It also shows that anything less than 21 is negative. I've read that some people can be negative and have anti musk antibodies. Maybe you can mention that to your doctor.

Over the past ten years -- the first test was positive, the next neutral, and then negative, and now back to positive again.

Never had an IVIG before, so I don't know how that might affect your repetitive stimulation test.

I've given up looking for answers several times because doctors didn't want to dig deep enough, or they were ordering the wrong tests, but now my body is telling me that I have no choice but to get answers. I'm not sure what your symptoms are, but if your muscles are weak don't give up until you find an answer.

Thanks so much for your reply QUandry ... I hear ya.. I really tried to be in denial and ignore my symptoms, but my body thought otherwise.. I was told by several dr's that I was just a stressed out working Mom (I was a few months post partum).. I told them I thought that would be great if that was the case - best case scenerio I'm a head case right?? They would perform a test, it would take weeks to get back, if that was negative do more and wait.. all while I was deteriorating and couldn't work, hold a fork, take care of the kids.. finally I couldnt' breathe and I got admitted for IVIG..
The range of the tests I did was 0-20 is negative, and I was 20... I have never mounted antibodies to vaccines or illnesses I have had.. So that messes up a lot of these antibody tests for me.. I have times where I ignore this all well, but in general it affects every single second of my life since my body just won't work, so even though sometimes the dr's make me feel crazy, we do more tests when I'm not burned out on it! Thanks again - Are you planning on doing any treatments?

So far the only treatment I've had is Mestinon, and it seems to be hit and miss. Tonight I can hardly breathe in or out. It's like my chest is full and can't move up or down. Sometimes the Mestinon works good for breathing, but not tonight. I see a doctor on Friday, but if I don't feel any better I'm going to the ER. However, the ER in the town I live in doesn't have any neurologists on staff. and the last time they sent me on a two hour ambulance ride where they did nothing either. I think they need to do the IVIG on me.

Sounds like you do need to do something else!!!! Breathing is not to be messed around with - though I feel like too many dr's see the "normal" pulse ox and write off the breathing as other things - anxiety etc.. it wasnt' until they did the Pulmonary function testing that they realized I was in fact having real problems breathing.. and of course that does cause me some anxiety, wouldn't not being able to breathe cause anxiety in any normal person!?

Keep us updated on yourself, Sounds like the dr's do need to try some IVIG..... or something!!! It really has made a tremendous differnece with myself.. to be able to take care of my kids and go back to work again was amazing after almost 6 months of barely being able to walk across the living room!!

Quandry, If you can hardly breathe in or out, that's a dial 911 MG emergency. I'm sorry you didn't get the appropriate care last time. Do they realize that you could stop breathing and die? Good grief. They need to do an arterial blood gas. Also, they need to consult with pulmonology right away. They handle the breathing portion of an MG crisis! Neuros are NOT qualified to do that. I hope you'll get care soon.

bny, Will you please tell me your "real" name again? BTW, I don't do any of that "friending" stuff. I just don't have energy for things like that. I'm not even on Facebook.

Do you know which lab they sent your AChR antibody tests to? It sounds like a Mayo range. My first modulating was just slightly below normal. My second was positive. These tests do change. And since they are IgG antibody tests, yes, the IVIG can affect them. Just like a low IgA can affect a celiac disease antibody test.

I hope that helps.

Annie

I am getting better now that I'm taking more Mestinon. I saw the doctor today and he's going to put me on Imuran after I clear some blood tests; cbc and cmp. He's also going to check for a Thymoma too. The doctor told me to take a sixty mg pill every four hours instead of every eight and not to exceed 1500 mg in a 24 hour period.

Quandry - great to hear that you are feeling better!!! I would love to take a little "magic pill"!! Are they going to try IVIG on you??

Annie- I had read that you had the same antibodies, so I was trying to private message you, but didn't know how to unless I "friended" you.. is there another way?? My name is Allison They did send it to Mayo.. How do you think the IVIG would affect it?? You think it would be more likely to give a false positive or false negative?? I looked back at my records, and can't find that anyone else ever tested that specific test, I was going to compare it.. They think I am celiac (I have been completely strictly gluten free for almost 2 years now- as all of this started I had MAJOR GI issues and lost liek 25lbs in 6 weeks or so, it was crazy!!), i have 2 family members with it too.. However, I have never mounted antibodies to vaccines or illnesses (hep B vaccine, varicella - i had chicken pox and the vaccine, MMR vaccine - all my titers are ALWAYS negative.. as are my fathers?!!), so that makes me think I do have some sort of immune deficiency, therefore complicating all of these many antibody tests.. so when a test does come back slightly positive, everyone seems to take note a little more (my ANA has been elevated, sjogrens and CMV, thats it though) ..

So, what do you think about the level being 20 with the IVIG? I Have my repetitive stim on tuesday and am nervous, about the results, not the test, shock me a ton if it will give me good, happy, treatable answers!

I may have asked you before, Allison (thanks for that!), but have you had your Ig's run (IgA, IgG, IgE, etc.)? Maybe you have a primary immunodeficiency. If levels are low, then you can get a false negative of a test.

If you haven't seen an immunologist, it might be a good idea to get a referral to one at Mayo or in private practice.

I'm sorry but I turned my PM off because I have absolutely zero strength lately and I hardly have what it takes to do the basics every day.

I'm not sure about the IVIG and your test. When did you have IVIG? Did you have the AChR test after or before? IgG would affect the MG test since it is an IgG test. IgG also has subclasses (1-4) and they can individually be deficient.

Try not to over think the RNS. Be warm and hydrated. They'll see what they see!

Were you ever tested for vitamin deficiencies? Are you sure you have all gluten out of your diet? There is gluten put in shampoo, toothpaste, supplements and lots of other stuff. I'm a label reader, since I get really sick on gluten. Even some hair coloring has gluten in it.

If you had damage a long time, from undiagnosed CD, then the villi might not improve without Prednisone. No, I'm not saying you should have that!!! Did you ever have a biopsy of your small intestine or did you just go off of gluten?

I hope the test goes well. Let us know how it turns out!


Annie