[WebJunk]

Do not think I am there yet, but want to know for reference. Not even sure I have MG yet. My blood test Acetyltholine receptor ab,bloc was less than 30%. Some places list that as negative, some as borderline. Will not be able to see a Neurologist for at least a month yet.

[AnnieB3]

Hi, WebJunk. Welcome.

Do you have a copy of your test results? These days, they usually do only the binding and modulating antibodies. Modulating antibodies are made up of modulating and blocking (so they say).

It doesn't matter what the other lab reference ranges are, only the one of the lab where they sent your blood to. Do you know their reference range?

A MG crisis is where you either can't swallow well, breathe in OR out well, or cannot move around well. It can be any or all of those things. We have 640 skeletal muscles and any number of them can become weak to the point of not being able to move it well or at all. For example, if you can't keep your head up due to weak neck/head muscles, that's an emergency, too. It could be a sign that your other muscles will become as weak as well.

Sometimes, the weakness can come on so slowly that you don't know just how weak you are. That's when it's the most dangerous.

When you get to the point of feeling very weak, weakness can progress quite rapidly. And it can become so severe that you need help immediately. So, it's better to seek out help before it gets that bad!!! Don't let that scare you, just get some help.

If you aren't doing well, the best thing to do is to call your neuro. If you are doing so badly that you can't do one or more of the above, then it's time to dial 911. It doesn't matter that you don't know whether or not you have MG!!! So many new "possible" MG patients have been in this position. If you need help, go in!!

If you do go in, tell the ER doctor that you are suspected of having MG. They should do a clinical exam, check your O2 AND pulse (pulse goes up as O2 goes down), blood pressure, and do an arterial gas and breathing tests if your breathing is bad. If your O2 is low, they need to do an ECG or constant ECG monitoring because a low O2 is bad for the heart (brain and other tissues, too).

You can ask your neuro for Mestinon, if he thinks you have MG.

Does any of that answer your questions? What more can we do to help you out?

Annie

[WebJunk]

Thanks for the reply.
They tested a several things. The only one they seemed to be concerned with was: Acetyltholine receptor ab,bloc which was 28%.
This is what they gave me as the reference:
0-25% Negative
26-30% Borderline
Plus 30% Positive

I also have Crohn's Disease and that complicates things as some symptoms like fatigue are common. But the fatigue has been getting progressively worse the past six months. Had a PFT about a month ago and that was normal. Did have one instance of extreme fatigue a couple of weeks ago where I could not get myself out of the couch for two hours, even if my house was on fire. I can swallow although feels like a sore throat or something constricting. I also have food regurgitate but think that is related to my Crohn's. I have lifted weights and did running for decades. Lately when I go to the gym I retain most (degrades during the workout) of my muscle strength but after I turn to jelly and need sleep. Hardly go the past few weeks because I feel week, short of breath for a day or two after. Today its like there are belts around my chest very tight.

I don't have a neuro yet. Only got the blood tests about a week ago. Supposed to see one in January. Trying to get an appointment at the Mayo Clinic instead who also treat my Crohn's Disease. Also because I have had serious issues & reactions with some Crohn's meds which seem to be also used for MG. Only have one last Crohn's med (Remicade) left to try but was told to figure this out first. And I am steroid resistant now.

Thanks again for helping!

[AnnieB3]

Are you on a steroid now? If so, the fact that you produced any antibodies should tell a doctor that you have MG! Steroids suppress the immune system that produces the antibodies! So, in other words, your antibody test could be a false negative (or a false borderline).

What do you mean by steroid resistant?

Have you been tested for celiac disease? Vit. B12 or other deficiencies such as Vit. D?

What you are describing sounds a lot like MG. The swallowing issues, too. Don't assume everything is due to Crohn's!

You should know that MG doesn't like to be pushed, and that is exactly what you're doing at the gym. MG WILL push back, and you could become progressively worse in a short period of time. You really don't want to go into a MG crisis!! Working out also raises your body temperature. MG becomes much worse in hot weather, exercising, having an infection, or anything else that heats the body up (yeah, sex, too).

Who ran the AChR blood tests? Ask that doctor to get a referral to Mayo pronto! With MG, you can't wait until January.

I hope you can get some help right away!

Annie

[WebJunk]

I last was on pred over a year ago. Steroid resistant means I do not respond to them anymore. Pred, budesonide, etc., none work. Not even the side effects though I had to taper. Though they used to work for me but not anymore. So knowing that what does my test mean?

My vitamin D and b12 are normal but my GI doctor has me take supplements as a precaution. No celiac test. Should also mention my lymph node are all swollen right now. I know you said don't presume its all Crohn's but get this now and again. Its somewhat common with Crohn's disease.

Don't know who did the test. Was taken at the hospital's lab but told it was sent out.
The Mayo Clinic does not take referrals but as a current patient it helps to get an appointment. Just hate to deal with Minnesota in the winter

I know I should not be exercising but hate to lose what I have worked up to for so long.

[AnnieB3]

Well, Mayo most certainly does take referrals! It usually has to be a neurologist referring you to a MG expert there.

As far as the winter in MN, it's not that bad at the moment. There are a few hotels that are connected underground to Mayo, so that you don't have to go outside to get to the clinic. They also have a service whereby you can be wheeled to your appts., in case you cannot walk very far.

I didn't want to assume what you meant about being steroid resistant. Are there any drugs you are on now that suppress the immune system? Steroids aren't the only ones that do that.

What were your exact B12 numbers? People can still not have B12 getting to their tissues and have so-called normal test results. Do you have fatigue that doesn't fluctuate or numbness/tingling in the face, feet, or hands?

You can easily tell the difference between Crohn's and MG. MG weakness fluctuates, so if your swallow issues are fluctuating, then it's probably the MG.

Was the PFT you had a handheld version? Or were you in a "booth?" Regular PFTs might not be sufficient or revealing enough for those with MG. MIP and MEP are specific tests they do for someone who is suspected of having a neuromuscular disease. AND, it's important to know ALL of the numbers they get, not only the highest, because MIP or MEP can show if you are becoming worse the more you breathe.

AND a month ago means nothing for your MG RIGHT NOW. MG fluctuates and if you are having a hard time breathing right now, they should be repeated right now.

You can still do some exercises, but not for long and not with heavy weights! And I still think you should wait until you see a neuro, but that's my opinion. You don't want to risk a crisis right now. The worse MG gets, the longer it takes to recover from it.

Is there a pool at your gym? Doing very simple exercises in a pool might be okay right now. Most neuros recommend a pool (if it's not too hot) for MGers. Of course, not if they aren't stable, however!

Only a neurologist can tell you for sure what your test means. They should be highly suspicious of you having MG, though.

Take it easy!!!

Annie

[WebJunk]

Anyone able to answer my original question???

[AnnieB3]

Was your original question "What is a MG crisis?" or "What do my test results mean?"

I already answered the first question. Are you getting worse?

Only a neurologist can put this all together for you and make any kind of conclusion.

Can you guys take a stab at answering Webjunk's question(s), please?

Annie

[suev]

Basically, an MG crisis is a potentially life threatening incident experienced by someone with MG who gets so weak that they are unable to properly breathe well on their own. It can come on fairly quickly - - but usually the MG'er realizes in retrospect that there were warning signs -- they were just ignored.....until they couldn't be ignored any more. At that point the individual ends up in ER and is often admitted. Sometimes respiratory support in necessary.

I've never had a 'crisis'-but I have been guilty of doing more than I should have and paying for it with a few days flopped on the couch! I'm VERY lucky that my MG is not at all severe and I am able to get by on Mestinon alone. Others here can give you some first hand 'crisis' stories. It's very scary and can be quite dangerous.