I am scheduled for a single fiber EMG in two days. So far all my blood work has not showed MG and the regular EMG was also negative. I am on Mestinon and it is helping me significantly. I am very concerned that if this test does not show MG that my neuro will take me off the Mestinon. I stopped taking medicine as of this morning in preperation for the test and am already feeling my eye lids get heavy although my arm and leg weakness are relatively unchanged(yet).
My question is that if i dont feel overly weak by the time of the test, would be advisable to try to fatigue my muscles before it is administered. I know better than to try to over do it, but would it help the accuracy of the test if my muscles are a little fatigued and feeling weak?

Sadie

Sadie, I would not advise trying to make yourself worse for the test. That could backfire, if you have LEMS instead of MG, for example.

Before the test, make sure you're well-hydrated. During the test, make sure that you are warm.

You will be asked to participate during the SFEMG. For instance, if they are testing your forearm, they will ask you to lift up one of your fingers slightly so that they can optimize the signal they're getting. If you need to rest, make sure they know that. It stings a bit and everyone handles it to a different degree. I'm sure you'll do just fine!

I hope the test goes well.

Annie

My results were negative for MG, I'm off of the Mestinon and have been reffered to a psychologist (No, i'm not setting up that appointment). And all of this information was given by the nurse over the phone. I first saw the neurologist one time 2 months ago. I was too sick to even speak,walk, or eat. I had lost 16 lbs. and was so dehydrated the skin on my hands stood up permanently when pinched up. I have not had an appointment since that day! Obviously I am seeking a second opinion, so I am looking for insight. I don't know if I have MG. (all the tests say I don't) but I have many symptoms that are in line. Are there non neurological issues that would cause facial droop, weakness, fatigue, swallowing difficulty, short of breath, ringing in ears, sensativity to sound, blurry vision, easily fatigued eyes, insomnia, Muscle spasms, sub sternal chest pain that extends to my back, etc, all of which come and go in cycles? I am dealing with my illness the best I can but there are days I am so sick I have to slide off the chair and pee in a bucket because I can't even stand up! I'm a homeschool mom with 8 kids. My youngest is 2yo. My husband is on leave from work to care for me and the kids when I am not able to do it, but if we don't find answers it is going to completely turn our lives inside out. I am feeling so abandoned

I really feel for you! All my test for MG are also negative. I have done three SFEMG, two of them are borderline. I respond very good to Mestinon but since all my test are negative no one seems to take it serious. Before I was put on Mestinon the doc keep telling me it was all in my head and that I need a psychologist. They still do, and say that my breathing problems etc is not real. Founding you self with a lot of symptoms and no one believes you, is very frightening and I totally understand that you are feeling abandoned. Itīs terrible. Keep fighting! Try to find another neuro. Itīs the only way, but I know itīs hard!

Your symptoms sound worse than mine, but the rest of the story seems to tally. I am going for the SFEMG in January, and fully expect it to be negative. However I managed to get my GP to prescribe Mestinon, so the Neuros decision will have less impact.

The Mestinon really helps, and every time I have seen the Neuro (twice) I have asked, what else could cause these symptoms and be improved by Mestinon. NO Answer!

If the Mestinon really helped you, then go to your GP and see if they will continue to prescribe it whilst you search for another Neuro. Keep Fighting.

Sadie,
I understand how you're feeling. Yes, do get a 2nd opinion, and a 3rd, 4th and 5th.....if needed. It took me seven years to get a diagnosis (and treatment). My SFEMG and antibody tests were negative. I was finally referred to Mayo Clinic and received a diagnosis after testing positive on the Tensilon test. They did not recheck my antibody test but did do another SFEMG (which was negative). In spite of the negative EMG, they opted to offer me treatment, including IVIG, b/c my Tensilon test was positive and all my symptoms pointed clearly to MG. And I responded to Mestinon.

So...don't give up. Do what you need to do to get the support at home that you need. Family, friends, etc. As you go to other appointments, it's helpful to take a support person with you--ideally your husband if possible. Always good to have a extra set of ears and he may recall symptoms and important clinical history that you may forget to mention.

Cate

Okay, it's time for some other specialists.

Go see a neuro-ophthalmologist to see if they can figure out a cause for you eye issues.

Go see a pulmonologist to assess your breathing (including MIP and MEP).

Get ALL of your records, including tests and notes from the neuro. They don't always tell you everything.

You could even consult with a rheumatologist to see if it's an inflammatory condition.

There are MGers who have no antibodies or a positive SFEMG. Would the neuro be willing to do a Tensilon test? A neuro-ophthalmologist might.

I'm really sorry that you don't have any answers, but that doesn't mean there isn't something wrong with you! Take some time to regroup, recharge your batteries, and then have at it again. Try to find doctors who are either in private practice or who have a great reputation.

I hope you will find answers that lead you to the truth!

Annie

I finally got a bit of hopeful news today. The leading MG doctor in our area has accepted me as a patient and I see him in a month. I'm sorry that I use this forum to vent my frustrations so much! Despite setbacks I remain overall positive and grateful for all the small blessings I have. I am grateful that I have good days mixed in with the down days. I am not going to let one doctor discourage me. I very much appreciate the encouragement that all of you have offered. It has helped more than you know.

One question, my vision is usually only effected when I am experiencing severe weakness. Would I need to be having active symptoms when gettin my eyes tested for problems to be detected?
I have a wonderful pulmonologist that I have worked with for seven years. He doesn't thinks I have MG because I have the ability to hold my breath, although he does see the dips in my test scores. He is in the same boat as all my other docs. They know something is wrong but just don't know what is causing it and they are afraid to treat me without an official diagnosis.
The neurologist that I am seeing next month is a research doc so I'm hoping he will be willing to take a chance and at least try to help me.

If you have MG, a neuro-ophthalmologist should be able to fatigue your eyes and determine if you have it. They do very specific visual tests to look for double vision as well. JUST GO SEE ONE!

Has your neurologist done MIP and MEP? If not, they need to do that.

I can hold my breath. Not as long as other people, but I can still do it. That IS NOT a sign that you don't have MG. I don't care how good your doctor is, he is not a neurologist. Their job is to assess your breathing and look for any patterns, such as restrictive or obstructive, and to see if there are any signs of neuromuscular fatigability (via MIP and MEP).

You might not have MG, but someone (or a group of them) needs to figure out what it IS, not what it ISN'T!!

Annie

Yes, my pulmonologist did the MIP MEP tests but he didn't really say anything about the results. I will see about getting copies of the results and his notes. I have been looking for a neuro-ophthalmologist but it looks like I may have to drive a couple hours to find one. I will start working at getting a referral.