Achr modulating antibodies
 

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!

:hug:
Annie

Thanks so much Annie

As far as the nutritional deficencies - that's a big YES.. they tested me a ton for that.. and the funny thing was I was actually TOXIC on vitamin B6.. since I have MTHFR.. I was told to take aspirin, folic acid, b12 and b6.. well I was just taking one drug store pill a day (for almost 4 years).. turns out the ones they sell at the drug store are waaaay too much B6.. i had stopped taking it 10 days before the test and it was like triple the normal- ugh, i felt so stupid for taking it for so long ! My other tests were good.. since all this started with wicked GI symptoms, i was initially admitted into the hospital for generalized weakness and GI issues.. I had bad left upper quadrant pain with it too.. I coiuld barely put one foot in front of the other, and I couldn't make my face move - the crying or smiling face.. I remember crying since I couldnt 'make the crying face haha
They did the colonoscopy/endoscopy several weeks after I was gluten free, as well as the blood work.. and it was all normal (except gastritis and esophagitis).. I thought I had the immune panel run in patient in the hospital with my neuro admission..I swore I saw the computer screen with the results and they were all flagged as abnormal (but couldn't find them later, and my neuro doesnt' talk to me a lot).. I had an IgA panel run one time after that, but was on IVIG and it was normal (like a week after IVIG)

My achr modulating test was 3 weeks and a few days after my last IVIG..I would think that it wouldn't be false positive from IVIG since they hoepfully wouldn't take it from mysthenia patients! what do you think??

I think I have most of the gluten out of my diet.. I had read about cosmetics and it was in some of my chapsticks!! But, I am very cautious (though my kids eat gluten and I'm sure i get some by kissing on them).. and I NEVER EVER eat out at all - lots of cooking at home!

My GI issues got better after starting the gluten free diet, by a lot, but they didnt;' resolve until my first round of IVIG... though I also had antibiotics for my aspetic meningitis (they wanted to make sure it was aseptic first).. at the same time - so who knows..

Does being dehydrated affect the repetitive stim? I think they are doing SFEMG as well. I just get nervous anytime a new dr examins me.. I am afraid that they will find something awful.. and give me a death sentence.. i truely have PTSD from my first dr's appointment from this all!
thanks Annie!

B-R-E-A-T-H-E. ;)

PTSD is something that needs addressing too. You can't "wish" your way out of it. There is a new "touch" therapy that works really well.

First, get your medical records! Don't guess at what those Ig results were! If you have an immunodeficiency, that needs to be looked at by a specialist. Possibly a geneticist.

It's hard to say about the AChR modulating test being affected so long after having IVIG. It's more important that you have the IVIG since you don't do well without it. Kind of silly to go off of it for a stupid test. Maybe your neuro could redo it in 6 months to see if it's gone up.

Staying hydrated and warm HELPS with the EMG, RNS and SFEMG. Geez, you need to really relax about this whole thing. And I do have PTSD from numerous doctoring debacles so I do get how doctoring can make you hyper just thinking about it. Being able to reassure yourself and stay calm is going to help you get through the test anyway. Do you meditate? Can you focus on something you love during the test?

Don't take Benadryl within 48 hours of the test. It does the opposite of Mestinon and could affect the test.

Gastritis can be from more than one cause. Did they check you for H-Pylori? Are you taking any antacids or acid blockers? Those can cause it too. Stomach acid is a good thing and as you age, you lose it. A lack of it can cause gastritis too. And the symptoms of not enough and too much stomach acid are so similar. Both of those conditions, gastritis and esophagitis, can open you up for cancer. So it is important to see a gastroenterologist in an attempt to figure that out. Or a primary doctor first.

I'm sure the tests will go great. It'll be what it'll be. You're already getting good care and that's half the battle.

Annie

Thanks Annie.. I know.. I do fine most of the time, but give me a Dr's appointment (neuros only), and I get wigged out really quickly.. I think being in that Dr's office all alone on a friday with a 3 month old being told it could be ALS... Ok see ya monday for the EMG.. did a mental number on me... I did take some anxiety meds occasionally for a few months during those few months of decline.. but I really didn't like doing that.. but after so many dr's told me I was so anxious, I began to think - maybe my symptoms are all just from anxiety haha- i wish.. No, I don't meditate, and probably should.. I used to do yoga.. and the best stress relief was running, or hiking in the mountains.. I am a tightly wound - used to be energetic person, so I think when I have this built up mental energy - not being able to physically release it, builds up.. schedule a dr's apt with that = freak out mode..

Sometimes I'm able to tell myself it is what it is, i can't change it.. and then I think of my kids, and how much I want to be here, and do things with them, then the worry really sets in.. but I know it doesn't help a thing , worry.. but still sometimes my mind gets the best of me..

I have been checked for H pylori- it was negative.. they put me on H2 blockers after the endoscopy..I took them for a while, and then just stopped as I felt I had so many meds coming at me, and the neuro symptoms started and I had no idea what the cause was, so I backed off - since being gluten free I don't have the esophagitis I used to feel.. though if i do get a hold of gluten, i get the worse LUQ pain.. I can tell when i accidently ingest it now..

I will try to calm down.. I think also trying to be strong for my family and never being able to release that mental energy, since no one can really understand anyways.. builds up.. most of my friends are stressed out about shopping for their vacations - ha.. so it's hard to relate sometimes.

Thanks again - I will hydrate hydrate hydrate.. and pray that my results give us answers, and good ones with good treatments! :) It's been a year since my last EMG/NCV.. but never had SFEMG or repetitive stim.. :eek: