I had the bloodwork test for MG done....and I know anything over 0.5 basically gives a positive for MG...I have been diagnosed with MG and my number was 248+.....that seems crazy high. I am new to this disorder/disease and trying to learn as much as I can and not scare myself....the doctor did mention Mesotin (sp), starting in a week or so...and he did mention the surgery...not that we are doing it...just that it could help. He wants a CT and MRI of chest to check thymus...I DO NOT have droopy eyelids or that...it is in my main muscles and breathing....can anyone else explain the SUPER high number on the test and just touch base with me and tell me I am not alone...

Hi, and welcome. We understand how scary this is, to have a new diagnosis with a rare disease--especially after having weird symptoms. It's wonderful that you have a diagnosis. It sounds like you're in good hands. I'm glad your doctor is checking your thymus and talking about Mestinon and the possibility of surgery. I have read that higher numbers don't necessarily mean a more severe case of MG in any specific patient.

There's a few things you should know. First, myasthenia can (but doesn't necessarily!) get worse fast. If you're having extreme weakness, or serious trouble breathing, or you find you can't swallow, or if some new symptom pops up that alarms you, don't hesitate: go to the ER or call an ambulance. It's nothing to fool around with, especially if it involves your breathing muscles. You need to get to a hospital.

There are "rescue" treatments for myasthenia that work really well (for instance, they can clean the antibodies out of your blood with plasmapheresis, which is similar to dialysis. They can also shut down the production of the antibodies that are causing the trouble by infusing you will pooled antibodies from donor blood. This is called IVIg. Some of us on this list have it regularly).

Those are emergency treatments. Mestinon is for treating symptoms daily. If you start Mestinon, ask for tips here! Another thing your doctors should consider are long-term drugs to slowly suppress your over-active immune system. There are a bunch of different choices here. The hope is that these drugs will eventually put you into remission, or at least reduce the severity of the symptoms.

Please feel free to ask your questions here! We all understand what you're going through--how scary it is, and how alone you can feel with a weird disease no one's heard of, especially if the symptoms come and go. By the way, I have no eye symptoms, either. It's hard to say what's "typical" with MG.

One more suggestion: it's very helpful to keep a journal. Write down what you did each day, what you ate, what the weather was like, if anything stressed or upset you, how you slept, your hormonal cycle if you're a younger woman--everything you can think of. And write down your symptoms. You'll be surprised looking back what correlations you find. Many of us have "triggers" that make things worse, and at least to some extent we can learn to avoid them. You'll feel better emotionally when you get to know the disease and its effect on you at least somewhat. It's the constant surprises and facing the unknown that's so unsettling. Hang in there--and talk to us! There's nothing that would make us happier than to be able to help.

Abby

I just want to say thank you...from the bottom of my heart...I totally cried when reading your reply back to me. Just for a little background...I am 43 and was Diagnosed with Fibro in 2001 (I now think maybe incorrect) but things over the past 10 years have gotten worse, sometimes slowly, but now it seems in the last 6-12 months that things are getting bad FAST....so I started to seek more opinions...my arms are so bad that I sometimes cannot zip/button things...holding things is tough...walking is hard...stairs sometimes are super hard...for the last year or so, I have been trying to get my allergist to do skin tests, but he treated me with prednisone because I could not pass any breathing test...nothing ever got better, actually got worse (I am wondering if I am not able to pass because of MG??) I know I am not is super shape, but I am not 600 lbs (not even 200....I stated in another post on here that I am 43 yr old woman between 100 and 199 and we will leave it at that!) I should not have difficulty climbing stairs and getting out of breath so easily.....aaaahhhhhhh I know I will get answers soon and know this is not going to necessarily shorten my life at all...just change things and I am scared for my 10 year old son, as he is special needs and won't understand a lot...if I go to the doctor, he always worries that I am going to die....so I cry when I think about not being able to do stuff with him, although I have not been able to do stuff a lot anyways....I will stop for now, as I am babbling and I want to rest my arms....Thank you again....

I just want to say: try to take heart. There are so many unknowns at this point, but there is good reason to hope! Some myasthenics go into remission. Many of those who don't, still get their symptoms under control. Getting a diagnosis is huge.

You will find ways to still do things with your son, even if they're not the same things (I have seven kids myself, including three little ones who I'm homeschooling). Your son will be able to adapt to the new "normal" when it all settles down--when you have more answers and more experience with day-to-day living with MG. I'm not saying that this disease doesn't continue to throw surprises at us, but you won't always be in such a state of emotional turmoil as you are now. Your reaction is warranted and normal, so let it wash over you--but know that it will get better!

Abby

Hi, Icrad1. Welcome. Do you go by that or another name?

Facing down any disease is overwhelming. You need to try to relax and give yourself some time to get your head around it all. Does it help to know that I've had MG my entire life and am okay? And I wasn't diagnosed until I was 41. My MG has been good and really bad, resulting in an MG crisis. So much depends upon how you manage MG. Stress is definitely not good for MG, so please try to believe that everything will be okay.

What you describe sounds like the AChR (acetylcholine) binding antibody test. Did they do the modulating antibody test too? They're normally done at the same time. Do you have the report? The reason I ask is that a thymoma (tumor of the thymus gland) is more suspect in someone with a very high modulating titer. Some people with MG can have one but not the vast majority!

Yes, your antibodies are very high. Antibodies alone do not diagnose MG but with your clinical symptoms plus that test, it's very likely that you do have MG. Do you know what lab did the test? Did you have an EMG? A Single Fiber EMG? Also, you can have really high antibodies and be clinically okay or have low ones and be really bad. They're not really the best indicator of how your MG is doing! So don't let the numbers freak you out, okay?

What you need to go on, like Abby said, is how you are feeling. If you can't move well, breathe well or can't swallow, it's time for that 911 call. They can take very good care of you in the hospital. I would add that when you are feeling up to it, you should find a good pulmonologist and have them run breathing tests. Not just the quickie ones but the thorough ones that include MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure). What they measure is how well you are doing at breathing in and out. They are specific to people with a neuromuscular disease. We can go into all that at a later date! Right now, you just need some basics.

You do NOT need both a CT and MRI of the chest!!! That's ridiculous and not good for your body. Most MGers have a chest CT only. It's your CHOICE whether or not you have Iodine contrast. Iodine can make MG worse. That's very problematic since you are not on drugs yet. You have the right to say "No" to the contrast!!!

Mestinon (PDF below) is a "helper" drug for MG. It keeps acetylcholine (ah-seat-ill-co-lean) around longer so that our muscles can use more of it, making them stronger. I'm really surprised you didn't get a prescription right away. Acetylcholine (ACh) is a neurotransmitter whose job it is to keep everyone's muscles strong. We just don't get enough of it due to antibodies either destroying or blocking our neuromuscular junction. That's the place where the nerves "send" the ACh into the muscles.

You're going to need some time to get used to all of this before you let them throw all kinds of drug options beyond Mestinon at you. Mestinon can have some side effects but most people do fine on it. The immunosuppressants, however, can be fraught with problems and you need to read about them first. Steroids are often doled out like candy and they can have some very bad long-term effects and are hard to come off of. They have "alogrithms" they use for patients but the problem is that not all patients respond in that kind of narrow-minded or predictable way!

You sound like you're doing the typical female thing . . . blame yourself for not being in good enough shape when you get sick! This has nothing to do with how much or little you weigh. MG is an autoimmune attack on the neuromuscular junction, where nerves and muscles meet. You didn't bring this on nor is this in your head!

Prednisone, BTW, can initially make MG worse. That could be what happened when your allergist gave it to you. You need to tell your neurologist about this because it would have an effect on any treatment you'd have.

The most important thing I can tell you about MG is that you cannot "push" it. If you do, it will just push back. It tends to then get exponentially worse, like the earthquake scale! The worse you get, the longer it takes to recover. So the most important thing is to rest between activities and not let things get worse. Get enough sleep. Take a nap if you need to. There are times when my MG gives me no choice in the matter and literally puts me to sleep.

Other things that can make MG worse are infections, surgery, heat and cold (when the body gets too hot or cold), doing too "sustained" of an activity, crying (stop that!) and some drugs. There are things you CAN do to help right now, like sleep well, drink plenty of water, eat good, nutritious foods and RELAX.

I'm not trying to scare you by saying what I'm going to say but you need to be aware of it. Many MGers have an MG crisis - where you get so weak that you can't walk/stand/move, swallow or breathe well - in the first year of being diagnosed. It's usually because they don't understand how bad MG can get and do "push" themselves. They can think that being on drugs means that they can go back to being "normal" again. You'll have to get used to a new normal. But that's okay. It's not a death sentence! As long as you respect the disease and take good care of yourself.

Do you have a significant other to help? Family and friends? I would highly suggest that, when you are ready, you make them realize how serious MG can be and that you may need help from time to time. Right now, however, the main issue is getting care for YOU. I would make that phone call to your neuro and ask to try the Mestinon! It comes in tablet and syrup form. I use the syrup, mainly because it absorbs better for me due to no stomach acid. It also is easier to titrate the dose amount. It's not, however, easy to carry around like the tablets are!

Please don't respond to my post if your arms are weak! It's not necessary. I just put those questions out there for you to think about. You need to rest those typing arms! I'm frankly concerned that you are bad enough to go to the hospital soon. You are saying things that sound like you need help right away. Don't panic about that! Just sit there and assess how bad you think you are. Sometimes you can get weaker so slowly and not even realize how weak you really are.

About the eyelids . . . if yours are at "half mast" all the time, you wouldn't notice a difference! Take photos of your face now or rather have someone else do it since you're worn out. Then take photos after you get Mestinon. You might find that your eyelids, eyebrows and rest of your face do indeed droop. I never noticed mine were drooping but ALL of my photos from my childhood and beyond clearly show ptosis (toe-sis)/eyelid drooping.

Anyway, take it easy. Dial 911 if you are very weak. Don't be shy about that either! Watching a movie to get your mind off of this for awhile might help too! We're here, if you need us. Abby and so many others here are fantastic at support and information. It's a great place to feel less alone with this disease.

Annie

Attached Files

Mestinon_Suspension_60mg-Tablet_60-180mg_PI_May01.pdf (38.7 KB, 253 views)

Hello Annie and yes my name is Darci (Icrad spelled backwards) I appreciate the support that I am getting via this site.

To answer your questions and fill in any "blanks" I might have left...
The test that the doctor did was the AChR binding antibody one...I do not believe that the other one was done at the same time. He is doing another binding one sent to a different lab this time, and he is asking if that test comes back normal for the lab to run the MuSK one...however my doctor said he does not think they will have to run the MuSK one because he is about 99.9% sure that the first test is accurate, he just wants to make sure. The lab that did the first test is in California...the second lab is Athena on the East Coast.

I have had CT of brain, to rule out stroke, tumor, etc. I have had nerve conduction tests, EMG, MRI of Head, MRI of pituitary and physical tests as well.

My doctor is planning on starting the Mestinon and seeing how I can handle that. The only other drug at this time that he mentioned was Prednisone...Prednisone can raise blood sugar and that is an issue, so we are going to cross every bridge together and make the best decisions for me and my life. I will mention to my doctor about the non-response I had on it before with my allergist and I am getting copies of my Pulmanary Function Tests and Spiromety tests done (and not passed) from my allergist.

I think you misunderstood my comments about being out of shape...what I was saying is that I knew there was something ELSE wrong besides not being in the best shape...I was not pointing the finger at myself, I know that MG is an autoimmune disease/disorder. I know it just is what it is...I was just saying that I knew something else was wrong with my body OTHER than just being a little out of shape. I was getting out of breath with the slightest activities, I was exhausted, I hurt all the time, my muscles were super weak and getting weaker....so I just knew I needed more answers.

I am married and have a huge support of family and friends (only a few select know at this point...I will talk to each when I know more about what is happening and how severe) I just don't want to pass on the wrong information, so I am waiting and learning as much as I can...I am also a teacher on Spring Break until Monday...so we will see how this is all going to work...I don't think I am bad enough for a hospital stay or visit....I can still do things...yesterday I put a few dishes away (my son helped me) and I put some clothes in the laundry (son helped again) and I took a nap and even went to a few stores and visited my mom...I have been living with this I think for some time, and I am used to doing stuff...I just am doing it slower and not nearly as much as other people some times....however since the diagnosis, I am more aware now of just how tired, sore, weak and out of breath I really am.

Thank you again...I am very glad I found this place!!!! However, my arms are tired and quivering again....so I am going to go rest them!!! Thank you for the support...ALL OF YOU!!!!

Okay...it is official!!!! I am on Mestinon...even though I just started (yesterday) I already notice a difference. For the next 2 weeks, I am on 30 mg in the morning and 30 mg in the early afternoon. Then I start 30 mg morning, noon and early evening for 2 weeks....then I go to 30, 30 and 60 for another 2 weeks. Of course, I see my Neuro in 2 weeks.

Anything I need to be aware of with this drug??? (besides the obvious...that is already known) If they do the bloodwork again, will my numbers be down? Does it affect that or is Mestinon just for raising the amount of "chemical senders from my nerves"? I am sorry...this is all new to me, once I keep using/hearing the correct terms, I will be able to use the correct terms!!!!

Am I able to take anyting if the side effects become super unbearable??? Like something for cramps, or diarreha or constipation?? I will be asking the doctor also, but since I am on here now, decided to ask you all as well.

Sincerely,

Darci from Chicago!!!!

Hi Darci!

Glad you are responding to the Mestinon! And I think it's great that your doc has you slowly increasing your doses slowly. It will give you the best feedback on what is enough or too much (which, of course, changes with weather, activity, stress, etc.!!)

You may be lucky and have no side effects with Mestinon. I don't. Anyway, it won't change your antibody levels at all, but it can distort EMG's. Annie has the best description of how it works....but think of it as a drug that slows down the deactivation of our muscle 'go juice'. It takes about 20-30 minutes to kick in and lasts for about 4 hours. Think of its effective time on a bell shaped curve - takes a bit to kick in, great coverage for a bit, then the effectiveness begins to wane.

Will be curious to hear what the second blood test shows - never heard of antibody levels as high as yours!

Well the second test came back POSITIVE also...NO SURPRISE...with numbers as high as the first test, my doctor didn't think anything differently. I am now up to a total of 300mg Mestinon a day (180 mg time span + 60 mg in the morning and an additional 60 mg by 2-3 pm) I go to Nowthwestern University Hospital to meet with a doctor who has more experience than my current doctor...my current doctor wants to see him and thinks I might be on a fast track to Thymectomy....I don't care!!!! I just want to feel better!!!

They are afraid to try steroids because of the CRAZY HIGH number of the antibodies...not sure of the result....so we will see what happens in Chicago next week...until then, I will go sleep on couch as I am super weak right now!!!