[Musicjunky1]

I have all the symptoms of MG: Droopy eye, slurred speech, muscle weakness, numbness and tingling, muscle twitching, trouble aspirating my own saliva and drinks, tongue pulling and tired muscles under my chin when talking or chewing. I also have a heavy feeling in my arms and legs. My problem is all three blood tests came back negative as well as the EMG. I have been referred to Mayo and I am awaiting my appt. I am at wits end as they won't even try Mestinon to see if it might help or anything else for that matter. Does anyone have any suggestions? I have asked for the chest MRI and Tensilon tests but they have not been ordered because the EMG was negative. I appreciate any help you all can give.

[AnnieB3]

Did they run a regular EMG or do a Single Fiber EMG? A Single fiber is more sensitive for MG.

A person can have MG and have a negative SFEMG and negative antibody tests.

Which Mayo are you going to, if I might ask? Mayo will probably redo the blood tests and do a SFEMG. That's standard for them to do. You might want to ask for pulmonology testing as well as the chest CT (not an MRI). An MRI is not what they do to look at the thymus, only a CT. Be careful about having iodine contrast because it can make MG worse, if you have it. They can see the thymus just fine without contrast. If they insist on it (you have the right to say NO), then they might try to premedicate you with Benadryl. Benadryl can make MG worse.

With Mayo neurologists, it's best to let them take the lead. If you go in "insisting" that you have MG, then they might thing you want to have it. Seriously! Just make it simple. Tell them your symptoms, when they happen, etc. and then see what they think. I'm not trying to tell you what to do, it's only that I've had way too much experience with Mayo.

Have you been to a neuro-ophthalmologist? You might be able to see one at Mayo too. They can assess any double vision you are having. Does it go away when you close one eye? MGers have "binocular" double vision and it goes away when one eye is closed. Our eye area muscles get weak to varying degrees and, therefore, cannot focus on objects in a synchronistic way!

I can understand not wanting to try Mestinon. If you don't have MG, it could make things worse. If you do get worse before your appt., you need to go to a hospital. If you can't swallow, breathe well or are generally overall weak, you have to go in. You don't want an MG crisis where you can't move or breathe! It's not super common but it does happen.

You need to be off of Mestinon before any testing anyway. Do you know when you'll be seen? Do you have to travel to Mayo? Travel can be very hard on MGers.

I hope that answers some questions. Try to relax! Stress makes MG worse. A lot of people have MG and do just fine, so try not to get too worried about it, okay? Take good care of yourself, like getting enough sleep, and you should be ok. If you do get worse, again, go to the ER. If you're really bad, you cannot drive yourself there! You'd have to dial 911. In the off chance you do have an MG crisis, you don't know how bad it will get or how quickly.

Good luck with your appt. I really hope you get answers soon.

Annie

[catie]

Originally Posted by Musicjunky1

I have all the symptoms of MG: Droopy eye, slurred speech, muscle weakness, numbness and tingling, muscle twitching, trouble aspirating my own saliva and drinks, tongue pulling and tired muscles under my chin when talking or chewing. I also have a heavy feeling in my arms and legs. My problem is all three blood tests came back negative as well as the EMG. I have been referred to Mayo and I am awaiting my appt. I am at wits end as they won't even try Mestinon to see if it might help or anything else for that matter. Does anyone have any suggestions? I have asked for the chest MRI and Tensilon tests but they have not been ordered because the EMG was negative. I appreciate any help you all can give.

I know how frustrating it is not knowing what is causing your symptoms. I hope that you get an appt. with Mayo fairly soon. I was seen by Mayo after having years of symptoms but negative blood tests and EMG, although I did have a mild response to Mestinon.

Mayo was able to schedule an appointment for me within several weeks of being referred. My experience there was positive and the visit was instrumental with helping my hometown docs move forward with providing me treatment.

If you're having eye symptoms, it'll be important that you be seen by a neuro-ophthalmologist at Mayo, in addition to a neurologist. When I was at Mayo they did many tests on me, although they didn't repeat the antibody blood test. I had a Tensilon test done, as well as SFEMG, CT of thymus, and PFT's. I forget what else, but I was there about a week for testing.

I hope you get answers soon. In the meantime, try not to stress too much, as that can make MG symptoms worse. Let us know how things go for you.

Cate

[Musicjunky1]

Thank you very much. That was very helpful. How long did it take for you to be diagnosed?

[pingpongman]

I was very very lucky!!! My first blood work came back Negative but a month later my neuro-opto DX'ed me with MG saying "I don't care what the blood work shows you have MG" sure enough 3 months later the blood work was positive.
Mike

[teresakoch]

You may also want to take a couple of pictures of your eyelids at night (which is generally when they are worse) - my neuro STILL thinks that I am doing "OK", because she sees me in the morning, when my eyelid is at its highest....

Granted, my MG was caught fairly early in the game - I went to see a neuro-opthamologist, thinking I might be getting some plastic surgery to remove extra fat pads. A simple 5-minute test with an ice pack had me making an appointment with a neurologist....

I STILL test negative on the antibody test and the nerve tests. Most doctors don't like to do the Tensilon test (mine did it at my request - not fun). My doctor was willing to let me do a Mestinon trial (I think she thought that it wouldn't work) - when I was able to take 90 mg without getting violently ill, that was enough to convince her that I did, indeed, have MG (MGer's are among the few people who can tolerate ANY dosage of Mestinon - 120 mg made me feel like I was gonna die).

But the Mestinon trial is the LAST thing to try - see what the other tests show first. It took about 3-4 months from that first opthamology appointment to get a "final" diagnosis.

Every doctor that I talked to said, "You don't want to have this disease." Well - duh. But if it's what I HAVE, I'd kind of like to KNOW that I have it, so that I can do my own research, talk to other people, know what to look for, etc.

Obviously, nobody WANTS to have this disease - but it's a relief to have a name for all of the symptoms that you've been having, and not to feel like you're some sort of hypochondriac....

[ginnie]

Hello, and I sure am sorry you are going through so much. I for one am glad you are going to mayo clinic. I went to the one in Min. It definately is the place to go for diaganosis in my opinion. I had gone to 10 doctors and nobody knew what was wrong with me. I landed there, and after exhausting tests, they found my immunity weakness. I fully believe they will get to the bottom of your symptoms. I found it a bit "cold" in the doctors dispositions to you, but they are good at what they do. The clinic is known for its ability to find the diagnosis. I wish you all the best. ginnie

[catie]

Originally Posted by Musicjunky1

Thank you very much. That was very helpful. How long did it take for you to be diagnosed?

It took me 7 years to receive a diagnosis, from my first neuro ophthalmology visit in my hometown to my evaluation at Mayo. I had been having symptoms for about 6 months before I was sent to the neuro-op. Don't let that be too discouraging, though. I would hope that I'm an exception to the rule.

The most important thing is to advocate for yourself. It also seemed to help me when I started bringing my spouse with me to appointments. He was able to validate the weird symptoms that I had been experiencing.

Let us know how things go. And feel free to PM me if you'd like.
Cate

[Musicjunky1]

Wow! I am overwhelmed and extremely grateful for all of your responses!! It helps me so much to ascertain knowledge from your experiences. Each one of you were able to provide much insight. I became a little "passionate" with my local neurologist and he ordered my chest CT stat. I had it this morning. They did it with contract and without. My speech was a disaster afterward as well as my walking, so I am hopeful that it was sign of a definitive diagnosis (as one of you said contrast makes it worse). I agree nobody wants this disease, but like you said not being diagnosed doesn't mean you don't have it and no treatment means not getting better. I definitely understand now why my neuro won't try the Mestinon now. Thanks for that helpful piece, as sometimes I start to feel like we aren't doing enough, but it certainly makes sense if nobody can stand it if they are not MG pts. Each one of you provided very useful information and I want to say thanks again for taking time to help me understand. I hope and pray that each of you are managing your disease well.

Angela

[Musicjunky1]

So, my CT of the chest came back as no tumor and no enlargement so it's looking more and more like it's not MG. While that would normally sound good that it's negative now I am looking at MS or ALS and that doesn't make me happy at all. Now, I am hoping it's MS and not ALS. Thanks again everyone for your great feedback and genuine concern. I really appreciate all of you.