Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hello everyone,
This is my first post to this site. I have a few questions that I'm hopeful someone will be able to answer or at least provide some insight for me. I understand this does not take the place of doctor's medical advice, but your experiences may give me the information I am looking for.
Not to get into too much detail... I have been suffering from MG symptoms for almost a year. I have been tested for several other diseases/conditions that have similar symptoms. My symptoms began with weakness and numbness in my legs which moved to my arms and eventually to my eyes. I sometimes get too tired to chew and on 2 occasions, I was so overwhelmed and scared by it, my husband rushed me to the hospital. I experience a lot of muscle twitching as well.
During the first few weeks of my symptoms, when only my legs were affected, my doctor suspected MG as he had seen it once before. I completed the blood test for Acetylcholine Receptor Antibody and it was negative. Since that time, I began to have ptosis and blurry vision. My first question is: is it possible that the negative result was because the test was taken before the onset of the worst of my symptoms, or does the antibody exist, with or without symptoms?
My doctor has ordered the test for the Anti-MuSK, however, a Family Physician cannot order such blood work here, so I have not completed that test.
I have been working with my Family Physician for several months and he has exhausted his resources to help me. He suggested that the drug Mestinon is relatively safe and I should begin a trial while waiting to see the Specialist. I began with 60mg 3 times per day. Eventually I moved up to 90 mg and I am now taking a dose of 120 mg 3 times per day. And life is wonderful. I can walk, climb stairs, carry my own coffee cup, make dinner, do laundry and the list goes on. I still have to take lots of breaks, but the extreme weakness is better. I am careful not to go too long in between doses as the weakness is overwhelming.
My question number 2: is Mestinon ever used as a diagnostic tool? Since it works so well, is that more evidence that I have MG? I did my research and I cant see how else it is used.
I have an appointment with a neurologist who specializes in MG at SunnyBrook Hospital in Toronto in about a month from now. Appointment wait times here can be several months to years, so I feel fortunate to get it. I am scheduled to have a Single-fiber EMG during that appointment.
Question 3: Should I stop taking the Mestinon for a period of time before that appointment? It will be very difficult to manage without it, but I want to make sure Im not covering up any symptoms.
I appreciate any insight that you can give me. I think I may be at the beginning of a very long journey.
This is my first post to this site. I have a few questions that I'm hopeful someone will be able to answer or at least provide some insight for me. I understand this does not take the place of doctor's medical advice, but your experiences may give me the information I am looking for.
Not to get into too much detail... I have been suffering from MG symptoms for almost a year. I have been tested for several other diseases/conditions that have similar symptoms. My symptoms began with weakness and numbness in my legs which moved to my arms and eventually to my eyes. I sometimes get too tired to chew and on 2 occasions, I was so overwhelmed and scared by it, my husband rushed me to the hospital. I experience a lot of muscle twitching as well.
During the first few weeks of my symptoms, when only my legs were affected, my doctor suspected MG as he had seen it once before. I completed the blood test for Acetylcholine Receptor Antibody and it was negative. Since that time, I began to have ptosis and blurry vision. My first question is: is it possible that the negative result was because the test was taken before the onset of the worst of my symptoms, or does the antibody exist, with or without symptoms?
My doctor has ordered the test for the Anti-MuSK, however, a Family Physician cannot order such blood work here, so I have not completed that test.
I have been working with my Family Physician for several months and he has exhausted his resources to help me. He suggested that the drug Mestinon is relatively safe and I should begin a trial while waiting to see the Specialist. I began with 60mg 3 times per day. Eventually I moved up to 90 mg and I am now taking a dose of 120 mg 3 times per day. And life is wonderful. I can walk, climb stairs, carry my own coffee cup, make dinner, do laundry and the list goes on. I still have to take lots of breaks, but the extreme weakness is better. I am careful not to go too long in between doses as the weakness is overwhelming.
My question number 2: is Mestinon ever used as a diagnostic tool? Since it works so well, is that more evidence that I have MG? I did my research and I cant see how else it is used.
I have an appointment with a neurologist who specializes in MG at SunnyBrook Hospital in Toronto in about a month from now. Appointment wait times here can be several months to years, so I feel fortunate to get it. I am scheduled to have a Single-fiber EMG during that appointment.
Question 3: Should I stop taking the Mestinon for a period of time before that appointment? It will be very difficult to manage without it, but I want to make sure Im not covering up any symptoms.
I appreciate any insight that you can give me. I think I may be at the beginning of a very long journey.
We must be nearby as I had to go to Ottawa to see an MG specialist. The MuSK test is very complicated even then. Ministry of Health has to approve it and my forms got lost and expired (good only three months) and cost was $1000 and blood would go to US. Richard had his test done in TO and only paid about $200. Ministry doesn't pay for transportation of blood to US so that might have been what he paid.
Your problems sound so much like mine! I was seronegative two years ago with mild symptoms and still negative with worsening ones. My SFEMG was all negative too. My doc said to be off mestinon for as long as possible. I was off from Saturday to Wednesday for mine.
I'm on 60mg mestinon x3 and it has literally given me my life back! At this stage I am a probable MG person due to symptom relief with mestinon. I had the heavy dragging legs with walking, problems with laundry and cooking and even talking for long, but not eye or vision problems. This summer (been on Mestinon since Nov 2013) I have hiked the Bruce Trail for two hours on a hot day, gone back to riding my bike, gardened without collapsing into the hostas and resumed my handbell playing.
Good luck in Sunnybrook. You may be told to stop the mestinon the day of the test, but my doc and folks here have said to go off longer if possible. I had to go from back to close to normal to using a walker to make it through half of an IKEA store before the test. This reassured me that we were on the right path - even with the non-remarkable SFEMG.
Feel free to message me
Flutebell
With respect to your first question, I don't think the negative result was as a result of where you are with your symptoms, as I mentioned about 20% or so of all MG's are seronegative.
With respect to question 3, I would call the doctors office a few days before the appointment and ask if you should discontinue your medication for a day or so. They will ask you what dosage you are presently taking and advise you from there. They may reduce and not cut completely. Even though your GP would have sent them a report, dosage changes are normal and they will tell you what they want you to do.
Good luck, I'm confident you will get a diagnosis one way or another, Sunnybrook is a great hospital.
Richard
(Not a doctor, LOL)
2. Mestinon positive response is a confirming test for myasthenia gravis.
3. Yes, stop Mestinon as it will mask the symptoms that are being tested.
If you have not been screened for cancer of the thymus or tumor of the thymus, that needs to be an early check.
MG symptoms can come from various MG types. LEMS is a version that is almost always related to an underlying cancer. So you should have a cancer screening too -- and you should have the MuSK test.
When Mestinon no longer is as efficacious in your treatment, it can be an indication that MG is progressing. Mestinon is a little like taking an aspirin for a brain tumor--helps with the symptoms but does not attack the cause -- an auto immune attack. Most of us who find Mestinon becoming less helpful have to move on to an auto-immune suppresant. Delaying that can put you into crisis, so pushing your doctors is really a necessity to prevent having a life-threatening crisis.
MG can be controlled, and the majority of us who have it do get it under control and can resume our lives. It took me about a year from diagnosis and crisis to control. Treatment needs to be aggressive and early to prevent crisis. The problem is the vast ignorance in the MD world about MG.
Good Luck
Glad to hear that Mestinon is working so well for you!
Yes - a positive response to Mestinon is often considered a strong indication of MG. However, there are some other neurological syndromes, that have symptoms that are similar to MG.
Some things to know about EMG tests.
First off: you are right, Mestinon may cause EMG readings, to fall in the normal range.
Also: while EMG tests have their use? For many MG'ers? EMG tests have been an impediment, towards a correct diagnosis. EMG is not a reliable diagnostic tool for Myasthenia. The tests often show normal readings, even when there is overall muscle weakness and obvious bulbar symptoms. My own AChR antibody blood test showed a very strong diagnosis of MG. Yet I passed the various EMG tests. (This was while I was laying on the test table, with my eye so skewed it felt like it was laying on my cheek.)
Some general tips, before an EMG test. As Richard said, you want to consult with your Neuro, but keep some tips in mind.
Stay off Mestinon before the test, as long as you can comfortably do so. The same goes for caffeine, of any type.
Exercise or walk moderately, just before the test.
Keep the tested areas as warm as possible, even asking for blankets beforehand, if possible.
Doing all these things? Does not guarantee that the EMG will show muscle weakness. Not - doing these things? May increase your chance of showing normal results.
Best wishes to you - Ross
We have very much in common. I've been suffering for 9 months now with many MG symptoms but have yet to get diagnosis. I got blood taken on Friday for ACHR but they couldn't do my MUSK one, secretary says Doctor didn't write it out properly. I've been waiting for over 2 months to get ENG test, apparently I have to go to Hamilton for it. I haven't been given any Mestinon yet, haven't seen a Neurologist yet either. Very good questions you asked and received very good answers from all the kind people here. Keep us posted ! :)
Welcome to the group. I agree with what was written by the other members, with a few points of clarification:
1) Yes; the lab tests (specifically the Acetylcholine test) have been taken as long as a year to show up positive in some people. That said, many of those people eventually tested positive for a thyroid condition, MuSK AB, LEMS, etc. In addition, there are 10-20 (depending on whose data) that are still "double" sero-negative. So while labs can rule MG in, they can't conclusively rule it out.
2) Yes; Mestinon can be used as a diagnostic tool, but it is not diagnostic by itself. To my knowledge, it has not been used to treat any other conditions, but it has been show to have some positive impact on other conditions. At the same time, it often has a negative effect on approximately 60% of those who are MuSK positive.
3) Yes; your EMG, RNS, and SFEMG tests will be more accurate with outside body temperature matching internal body temperature, and with no Mestinon in your system. With that said, your physician is the only person who should advise you regarding what to do about your medications. I would suggest you discuss the issue with your physician, and not adjust your medication on your own.
4) Bonus question: based on your reported symptoms, I highly recommended you see an Ophthalmologist, or preferably a Neuro-Ophthalmologist if one is available. There are a lot of things that could be causing your general symptoms, but far less that would cause ptosis or other eye issues. A good Ophthalmologist will very likely be able to provide you with an accurate diagnosis, or at least steer you in the right direction.
Good luck on your journey, and I hope you feel better very soon.
Scott