New and with a question about a test
 

Hi. I've been trying to a diagnosis for several years. I had a doc suspect MG but did an MRI and said I didn't have MG.
Recently I was sent to another neurologist and he did the paraneoplastic an pl. Well one of the test came back AChR binding an .25 with a positive result being <=.02 NP/ml. The western blot came back negative as did the CRMP 5 and the ACRI.
Does that mean anything at all? Or is it another useless positive test that means nothing?

Just want to add I've had some issues starting in 2009. I don't want to write a book about them and this journey I've been on. I'm sick of being told its in my head and the ending up hospitalized when I have a spell. Then they give me a trash can diagnosis because they don't know what's wrong with me.

Join the club.

I first got a diagnosis of MG very easily, but I never was positive. As a result, other doctors said I wasn't really MG, and that stuck in my head. Then, there were all the negative tests, so I thought well. . .

However, on the other hand, there was something they could not explain. My body was responding to Mestinon, and they didn't have a reason for that. Plus, I have a thymus, but they were saying that is not a marker for MG.

Yet, they -- for years -- refuse to believe that I could be one of the 10 percent that is neuro-negative.

A bit off topic, my primary physician thinks I have Lupus, because I appear to have it to her. My sister was the first one who thought I had it, because I have the same symptoms as a co-worker of hers.

s it even possible I have two hard to diagnose diseases? My doctor showed me pictures of patients w/Lupus, and I have the same symptom (swelling, hair loss, swollen finger joints at the base of the finger, fatigue, and I used to have rashes -- not the butterfly one). I never showed positive for that. I guess I'm consistent like that - LOL.

The thing with these disorders is that it can take a long time.

I went back to my old neuro. He's semi-retired, and he referred me to another neuro. She was the one who shrugged it off and went with neuro-negative. Hopefully, you'll find some answers, OP, but you have to be consistent and willing to look like a hypochondriac.

Hi, aztecnitemare. Welcome to the forum!

I'm sorry you weren't taken seriously for so long. That's fairly typical with MG symptoms. I guess that first doctor didn't realize that an MRI would not show anything in MG! What did s/he do an MRI of? What is useful is a CT scan of someone's thymus, which can show thymic hyperplasia or a thymic tumor. Don't worry, on the rare occasion that someone has a tumor, they can be benign.

The AChR binding antibody test is NOT a useless test!!! You have a positive result, which indicates that you do have myasthenia gravis.

ARBI - Clinical: Acetylcholine Receptor (Muscle AChR) Binding Antibody, Serum

Do you know if they did the AChR modulating test as well? If you don't have the results, please have them sent to you. You'll need them for your records and to give to your other doctors.

Do you live in the US? Or Mexico, given your forum name? If we can point you in the direction of a MG expert, let us know.

Those "spells," as you call them, are what is known as a "MG crisis." That's the point where not enough acetylcholine (us-seat-ill-co-lean) is making it to your muscles and they become very weak. You can have difficulty swallowing, breathing, or moving. Before that point is when a person needs to dial 911 and have hospital help.

You should find a good pulmonologist as well. They need to assess your breathing and follow your care. Neurologists and pulmonologists work together when someone is in the hospital, since a MG crisis causes such difficulty with breathing. So you need both doctors for your MG care.

There are many things to learn about MG. Please go to Home to learn more. Or Muscular Dystrophy Association to read more as well. There are certain drugs that can make MG worse, such as some antibiotics.

Stay out of the heat! That tends to exacerbate MG quickly. Other things that can make MG worse are infections, surgery, stress, lack of sleep, and doing too much without enough rest.

What else can we help with? I'm a bit rushed this morning, but I'm sure others will chime in!

I hope you can find a neurologist who will take good care of you! In the meantime, take good care of yourself!!!

Annie

Thank you. The modulating test came back 0% so I'm assuming thats a good thing.
I'm having an issue with neurological pain and symptoms as well. So that could be what's been throwing them off.

Where is the neurological pain? If it is in your hands, feet, face, or lower back, you might have a vitamin B12 deficiency. That is a very common deficiency, as is a vitamin D deficiency.

Some of us with one autoimmune disease have others, such as thyroid conditions, pernicious anemia, celiac disease, etc.

Doctors need to keep their eye out for more than one thing going on at once!

Yes, the fact that the modulating was low is good. Those with a thymoma often have a very high modulating number. However, antibody levels don't necessarily reflect the severity of MG.

I hope you will have proper treatment now!

Annie

My b12 is normal but my vitamin d is very slightly low. My thyroid checked out prefect.

I suggest you get your numerical result for the B12. Lab ranges are still outdated and go down to 180pg/ml which is no longer thought to be "normal" but still is not flagged by the lab.

Anything below 400pg/ml can result in neurological symptoms.

My mom's number was in the 400s and she had paresthesias that went away with methylcobalamin treatment. You really need to go by what the number was plus any symptoms.

Find a good vitamin D supplement. Recent studies suggest a direct correlation between low vitamin D and autoimmune diseases. 5000 IUs per day at least. Talk to your doctor!

As far as vitamin B12 supplements, a methylcobalamin tablet would be best (instead of cyanocobalamin). FYI

Annie

I just got a call about the MRIs he has scheduled. For some reason he is persistent in doing an inner ear and a spine but has to delay the cervical. I have had some intermittent dizziness but its not the main issue.

Before you are exposed to that many electromagnetic fields, ask your doctor WHY! Why all of the MRIs? Not everything is found on a scan. Will the cause of dizziness be found on an MRI? Highly unlikely. Besides, didn't you already have one (don't know which part of your body). You have the right to know why a doctor is doing tests.

When was your B12 checked? Recently? If not, they should check that again.

Many doctors tend to think multiple sclerosis instead of MG. It's as though they are in a state of denial about there being more than one cause for symptoms! Why else would he want to look at the entire central nervous system?! You have a positive MG test result. The chance of it being a false positive is very low. You should be seeing a MG expert.

There are muscles in the ear. Has the doctor thought of that? MG can affect any of our 640 skeletal muscles.

Perhaps you need a 2nd opinion before you end up having tests that may be unnecessary. Too much doctoring is just as bad as too little. In my opinion, some thinking before acting (by the doctor) may be in order.

Annie

These were ordered at the same time as the blood work. My most recent b12 was the 17th of may as was my vitamin d. He also did ANA and ENA which both were negative.
I just got the name of a neurologist who treats MG today. I just don't know of my insurance covers her so I have to wait for this doc to do his thing and then get a second opinion.

The problem with waiting is that MG is a serious disease if left untreated. Since you have already had what was probably an exacerbation and/or crisis, the chance of you having one again (especially in hotter weather) is great.

Why not call your insurance company? Make it clear that you need to see the MG expert right away. A patient has the right to have timely treatment. And you can see more than one doctor at a time.

The most important thing is to have a firm diagnosis of MG and have some form of treatment soon. You are in charge of your care, not the doctors! ;)

Annie

Ann thanks for advice. I don't even know if the test is truly positive, it was only a .25 and Ive read posts on here that it should be higher. Haven't been diagnosed yet and don't get to see the neuro until the end of July.
In my original post I asked if that was considered a positive. Apparently even though .02 is considered positive per the test that isn't high enough.

The Mayo Clinic invented the test. Anything over 0.02 is indicative of MG. Period. What is important is not the degree over positive; the fact that it is positive is what doctors go by (plus the clinical exam). I'm sure they'll do more testing (SFEMG).

ARBI - Clinical: Acetylcholine Receptor (Muscle AChR) Binding Antibody, Serum

I dare any neurologist to argue with that. :cool:

Annie