Diagnosis Question
 

If we been diagnosed 2 years earlier when our symptoms were mild and our treatment started at that time, would we be better off 2 or 3 years down the road? Or were we always going to end up where we are?

-Mark-

It doesn't make a lot of difference, unless you are a young person who responds very quickly to thymectomy. With MG, it's just a crapshoot, really.

One thing that I do not understand is when I was in hospital, why the neuro did not check my thymus since he suspected mg. The medical doctor admitted me and called in the neuro. The neuro said he was going to do a bunch of test to reassure that I was not having a stroke because of my stroke.He told me that he belived all the test would be good because he believed I had mg and he had no way of testing it. But I don't understand why he did not check my thymus, he checked everything else.

They need to do a chest CT scan with an IV contrast to see if you have a tumor on the thymus. These tumors are usually benign. If there is a tumor a thymectomy is not indicated. It is surgery and you were probably in no shape for it at the time. Have you had the CT scan yet?

Even with the thymectomy it can take 3 months to a year to for symptoms to lessen or be eliminated (remission, not a cure). Here's the kicker, it does not mean that symptoms will not return. There are no quick fixes and permanent solutions. I was actually hoping for a tumor, believing that if the thymus was removed, I'd get my life back. I learned here that it does not work that way.

Did your blood test show positive for the antibodies? According to my test "approximately 85-90 percent of patients with myasthenia gravis (MG) express antibodies to the acelylchoing recptor (AChR), . . ." But even if this test is negative, it does not mean you do not have MG. Sometimes a positive test will occur long after symptoms develop. Some people with MG never show this particular antibodies. That is the frustration nature of MG.

It not fair and I wish I could wave my hand and lift this burden from your shoulders, but it may be something you have to deal with for a long period of time. But one can still have a good life. You will develop a strategy for dealing with it. You are in the right place to do it.

If you have been diagnosed with MG, push your doctors to start treatment as soon as possible. See the text of the the fax I sent my doctor that appears in the thread "Questions" that you started:

http://neurotalk.psychcentral.com/thread200357.html

The first step is usually Mestinon. Sometimes that is enough to greatly reduce symptoms. It is also very important to get rest and sleep. MG symptoms are much worse when one is tired. Keeping a good attitude is also important. There will be good days and some bad days. You will be able to maximize the number of good day and minimize the number of bad days by relying on the knowledge and experiences of the kind members of this forum. You are not alone.

-Mark-

My blood test was negative for antibodies and this one of the reasons that I am having a hard time. The neuro I seen said he has seen this before. He has seen people that have it and only show up in a muscle biopsy. He put this is writing for me. He thinks that I shouldn't stop until I get muscle biopsy.

I've seen negative antibody tests in MG patients several times, twice this week alone in old House episodes. :)

You may need to site a more authoritative source than House episodes to kick-start your neurologist. Take a look at section 2.7, Diagnostic Procedures in MG, on page 14 of the MG Manual:

"The diagnosis is frequently delayed months or even years. The usual distribution and fluctuating symptoms often suggest psychiatric disease." I read in the forum this week that one poor soul was prescribed Prozac. She was not presenting strong enough symptoms during doctor visits for him to see there was a physical problem. Being a master diagnostician, the doctor thought his patient was crazy and he prescribed Prozac. Later she saw a neurologist who diagnosed MG right away. Although they might argue the point, doctors do not know every thing.

Get a copy of the free MG Manual:

Myasthenia Gravis: A Manual for the Health Care Provider

http://www.myasthenia.org/LinkClick....w%3d&tabid=125

Download it onto a thumb drive. Go to Kinko's and have it printed and bound. It will be the best $10 bucks you ever spent.

The Diagnostic Procedures in MG section includes:

• Edrophonim Chloride Test
• Auto-Antibodies in MG
• Elecrodiagnostic Testing in MG
• Ocular Cooling
• Other Studies

Push your doctors to explore the other ways to determine if a patient has MG. BTW once doctors know you know what they should know (but often don't), they will afford you a bit more respect.

There are a lot of big words in the MG manual. There is a medical dictionary linked at the top, right of the most forum pages:

http://www.nlm.nih.gov/medlineplus/mplusdictionary.html

Simply type the word into the medical dictionary and get an answer. It makes thing so much easier.

I would also print the few pages on Diagnostic Procedures in MG and give them to your doctors. MG strikes only 1 in 10,000, making it hard to get a diagnosis under the best of circumstances. Many primary care doctors may never see a case in their careers. Not having a positive blood test makes it even harder once they suspect MG.

Take care,

-Mark-

P.S.: sham0968 - Just sent you a Private Message.

MG Testing
 

Here is summary of MG testing:

The key sign that points to the possibility of myasthenia gravis is muscle weakness that improves with rest. Tests to help confirm the diagnosis may include:

Edrophonium test

Injection of the chemical edrophonium (Tensilon) may result in a sudden, although temporary, improvement in your muscle strength — an indication that you may have myasthenia gravis. Edrophonium acts to block an enzyme that breaks down acetylcholine, the chemical that transmits signals from your nerve endings to your muscle receptor sites.

Blood analysis

A blood test may reveal the presence of abnormal antibodies that disrupt the receptor sites where nerve impulses signal your muscles to move.

Repetitive nerve stimulation

This is a type of nerve conduction study, in which electrodes are attached to your skin over the muscles to be tested. Small pulses of electricity are sent through the electrodes to measure the nerve's ability to send a signal to your muscle. To diagnose myasthenia gravis, the nerve will be tested many times to see if its ability to send signals worsens with fatigue.

Single-fiber electromyography (EMG)

Electromyography (EMG) measures the electrical activity traveling between your brain and your muscle. It involves inserting a fine wire electrode through your skin and into a muscle. In single-fiber EMGs, a single muscle fiber is tested. Most people find this test to be somewhat uncomfortable.

Imaging scans

Your doctor may order a CT scan or an MRI to see if there's a tumor or other abnormality in your thymus.

©1998-2013 Mayo Foundation for Medical Education and Research (MFMER).

I know that taking out a thymus does not always cure symptoms of mg. I was just curious as why he didn't at least look at it while he had me in the hospital running all of these test that he believe to be negative. It does not male sense to me. My words were slurred the more that I talked. Doctors would take turns coming to talk to me and after rest I was not slurring but the more they tried to talk to me the worse that it got. I was agitated because I could not make my words come out and my jaw started hurting and he said that he could not give me anything to relax the muscle because it made it worse. But they were checking to make sure that I did not have a stroke even though I am healthy other than this problem. no high blood pressure or anything like that.

I had blood work neg and emg on one leg negative but when the test was done I had rested all night and my leg was not weak at time

In the Endrophonim test do they test your whole body or does it go in your whole body and what if you are not having muscle weakness at the time?

I had the Tensilon(endrophonium) test to confirm my diagnosis. I am double sero-negative and emg negative. You must have some weakness for the test to show definite improvement. Having eye ptosis at the time of the test is best but weak neck and shoulders work well too. I had both.
The test is done in the hospital in case of adverse reaction to the medication. I had a pharmacist standing by my bedside with atropine. My doctor said I did not need SFEMG to confirm my diagnosis further. Good Luck
Sandy