New here and need advice
 

Hi. My name is Paul and after suffering with extreme problems with my muscles for 8 years I am being sent for MG testing. My initial diagnosis was fibromyalgia, which I have never agreed with. My condition has gradually deteriorated and I am now at the point where I cannot walk without sticks. I am hoping that you may be able to give me some pointers as to what I can expect when I go from my appointment. Thank you for listening. :)

Hi, Paul. I'm so sorry for what you've been through.

Your neurologist should put you through some standard muscle tests, like pushing on his hand, walking on your toes, and holding your eyes up. I hope he will also do some standard blood tests to see if your muscles are releasing certain enzymes, that sort of thing.

If he thinks you might have MG, he will order a blood test to look for the antibodies. The most common antibodies are AChR antibodies. If this test comes back positive, it means you definitely have MG. If it comes back negative, you might still have MG (about 20% of people who have MG get a negative AChR test). He should then test your blood for other antibodies: MuSK and LEMS.

If all the antibody blood tests come back negative, there is one more test you can have that can diagnose you with MG, if you also have symptoms that fit. It's called a Single Fiber EMG (not a regular EMG). You will have thin needles inserted in your muscles, and the needles measure electrical signals in your muscles. Not every neurologist knows how to perform a SFEMG, so your doctor might send you to a neurologist who specializes in neuromuscular diseases.

What I've described is the typical route most doctors go in diagnosing MG. There are some other tests as well. Unfortunately, the whole process can take a long time. It can take several weeks for the antibody tests, and depending where you live, it can take a while to schedule a SFEMG.

Please feel free to ask questions here! The people here are just wonderful, and they know an awful lot. Many of us also know from personal experience what it's like to have an illness that's undiagnosed, or misdiagnosed, while it gets worse and worse. I hope you get answers very soon.

Abby

Hey, Paul. Welcome to the forum! It sounds like you're really having a hard time. I'm sorry about that.

Well, I'm no psychic so I'm not sure what your appt. will be like. ;)

Usually, neuros do a thorough clinical exam for MG which includes things like the upward gaze test to see if your eyelids will fatigue/weaken. They might test you for double vision (DV) by moving their finger in front of your eyes slowly from side to side. When eye muscles weaken, you can have DV in any area of your vision. With MG, when you close one eye, the DV goes away. Do you have ptosis/drooping eyelids?

Some neuros actually check your oxygen saturation, though it's usually pulmonologists who do that and breaathing tests. Do you have any breathing problems? Shortness of breath?

I don't know if you've had any EMG's but they can do an RNS (repetitive nerve stimulation test), a regular EMG or a Single Fiber EMG. If they haven't already, they can test for the AChR Antibody test (binding, modulating) and the MuSK antibody test, like Abby said.

If you end up being diagnosed with MG, they'll probably send you for a CT scan of your chest to look at the thymus gland. Some MG patients have hyperplasia or a tumor of the gland. Don't freak out! Not many people get a tumor. Some people get a thymectomy, removal of the gland, in an attempt to give them a better chance at remission - though it's not a guarantee.

If you get diagnosed with MG, there's a lot to learn about it. So, come on back and we'll help you out as much as we can.

I hope you and your doc can figure this out. It's sad that you've suffered for so long without a definitive answer as to what's going on. Keep asking questions!

If you get to the point of not being able to walk at all, are generally really weak, can't swallow or breathe well, then it's time for the ER, as in dial 911. If you have MG, you can get so weak that it can be dangerous. I'm not trying to scare you but to let you know that MG can get pretty bad. You might need additional support like oxygen or they might need to diagnose you in the ER and get you some drugs! So don't be shy about going in if you get worse, okay?

Take it easy and try not to overdo things.

Annie

Thanks Abby and Annie
 

Huge thanks to both of you. It is always good to know that we are not alone in this and to know that there are friends who care. It might help if I tell you my symptoms. They are:

Extreme weakness in limbs- wake up not feeling to bad but within a couple of minutes of being up it starts and gets worse as the day goes on. After a couple of hours i am miserable. Also discomfort if restless in bed. Tightness in muscles.

Sleep apnoea- Spent two days in bed this week and twice had periods of about an hour with breathing difficulties. Also shortness of breath during the day.

Eyes- Not sure if this counts as drooping but get times when I can't keep my eyes open. This is not through my usual tiredness just that I can't keep them open. This can last from a couple of hours to all day.

Mobility. As I have said I use two sticks for walking and quite often these are the only things keeping me upright. Also trouble turning over in bed and getting in and out of chairs etc. the use of the sticks has led to carpal tunnel in both wrists.
Inspire of the sticks there are still times when I fall.

Resting is quite strange as sitting does not help. The only thing that helps is laying down

To cap it all I also have a prolapse on the bottom vertebrae of my spine. A bit of a bummer because anywhere else on the spine is a simple operation with this they have to go in from the front and it has some worrying risks.

Well it is almost 9.30 and I have been up a couple of hours and already
struggling. How do you cope? Thanks again to you both.

Paul

Sorry forgot speech
 

Always being told to speak more clearly. My voice sounds fine to me but other people have difficulty understanding me. Very frustrating.

People used to tease me about how peppy and sing song-y my voice was and how clearly and distinctly I ennuiciated my words. My mother was Irish. Now my voice sounds like a drone with no inflexion and I talk like I have a lisp. My words slur together and can't get out right and I sometimes dribble. I do not talk as casually as I use to because I am embarrassed and I do not want to draw attention to myself.

kathie

Paul, I just want to say that many of your symptoms are very consistent with MG, so I'm so glad that you're being tested for it. To hear that you were diagnosed with fibromyalgia with symptoms like these makes me furious. When you see the neurologist, give specific details. Don't say "I get tired"; say "my legs get so weak that I fall down" and "I have trouble turning over in bed." Don't say "my eyes get tired"; say "there are times when I can't keep my eyes open even though I'm not sleepy." That sort of thing. Specific details.

If you are diagnosed with MG, the good news is that there are treatments for MG that help a lot of people significantly. There is a drug that doesn't treat the cause of MG, but helps a lot of people with the symptoms. It works immediately (by which I mean in the half-hour it takes to digest it). It's called Mestinon (generic: pyridostigmine). It's a relatively safe drug, so many neurologists will prescribe it to see if it helps, even if they only suspect the patient has MG and the tests haven't come back yet. You may walk out of the neuro's office with a prescription for it. I hope you do.

There are also longer-term treatments: drugs that may eventually put you into remission, and infusions that can make you strong for six weeks or so at a time. And some people have their thymus gland removed, which can help a lot, too.

Keep in touch here. Let us know how it goes.

Abby

Paul your symptoms sound like mine. It took a year of specialist and tests to finally get diagnosed with MG. If it were not for this forum I am sure I still would not have a diagnosis. I would not have persisted, I would have just accepted what the doctors said.

I did not have success with the first neuro. Several people from this forum suggested I see a neuro optomologist because they recognize the eye symptoms and that I go to a big teaching hospital where they see MG all the time. They were right on both accounts. The neuro optomologist checked for sustaining an upward gaze and I could not and he could see my trembling eye lids and he said I think you have myasthenia gravis. Even though my antibodies were negative he ordered the single fiber emg. It came back abnormal, a definitve diagnosis for MG. So do not let them tell you that since your antibodies are negative, it cannot be MG. I would insist on the SFEMG.

Most neuro, especailly in a small town, may never have seen a patient with MG. I live in a small town. There are 4 neuro groups between this town and the next. One neuro would not take me on as a patient when he heard they suspected MG. Of the 3 other neuros, only 1 had a patient with MG. That neuro thought I had MS. I am glad I traveled to the large city which has a teaching hospital.

They put me on mestinon before the SFEMG because I started falling. I felt results in a half hour of the first dose. I first noticed how much clearer I could see, I had no double vision and I could take a deep breath comfortable. It gave my legs more stamina. I could finally turn over in bed which I could not do for a year. It only temporarily relieves symptoms The mestinon lasts only 3.5 hours for me, but everyone is different. They have increased my dose twice in 2 months since I started. I have not experienced any side effect at all. I do feel the symptoms come back as it get close to my next dose. The symptoms never go away, they just subside. And somedays the drug works better than others because some days my symptoms are worse.

How do you feel in the heat or after a hot shower? MG is worse in the heat. Muscle respond better in the cold.

Good luck on your diagnosis and hang in there. Welcome to the forum but sorry you have to be here.
kathie