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...
Hi!
Im a 32 year old living in Sweden. I have suspect MG. My symptoms started last year, in aug. It all come very sudden and my legs just gave out on me. I had been tired a long time before but didnt know why. Maybe stress I thought. I also had some problems with my eyes but I have linses and thought that was the problem. The legs came back to normal after I have rested. When it started in my arms and hands. Im a nurse and my work is very physical. I began to drop things and couldnt hold and lifting. Everything was heavy! It was sometimes difficult to walk, my balance was bad and sometimes my legs just didnt come with me. In january I have to quit working and stayed at home.
I did go to the doctor already in aug, after my legs had gived out on me, but he said it wasnt anything special. In nov. I did go to the doctor again but they didnt do anything. In jan I tried to work 50 % but after a couple of hours I couldnt even walk around. The doctor didnt believe me and the symptoms came and disapeared, so confusing. In march I was finally send to a neurologic who immediately mentioned MG. They tock the bloodtest - both Achr and MUSK - both came back negative. I was send to EMG och RNS - both normal. Then they did a SFEMG in my right overarm. At the same time my left eye started to droop in the afternoon, I had doublevision and couldnt focus and started to have this heavy feeling in my chest. Even my neck sometimes just fell because I couldnt hold it up. All this test was negative and the next doctor I meet said that this is probably not MG.
I april I was very bad, my legs gave out on me, I fell at home and couldnt get up and I have problem with breathing. I was at the emergancy clinic and two nights at hospital, but the doctor just said - this is absolutely not MG and nothing else. Its all in your head. It was so terribal, I know something was very bad with my body and no one listening. I couldnt even walk on my own but they didnt care. I was in tears and they sent me home. Here in Sweden you cant change doctor very easily but my family started to tried to get me to another doctor. I live on my own, four stairs up and I couldnt managed it. I fell in the stairs, couldnt carey my food and so on.
During the summer I become much worse. I couldnt stand the heat. I had trouble to chew and then even to swallow. It was like a lump in my throat. I was at the hospital again and they took an MR - also negative. In aug. I finally came to a another doctor at the biggest hospital in my area. He said all this pointed to MG but the test are still negative. In sep. he put me on Mestinon 30 mg x 4. I immediately noticed a different. My legs became stronger, I could swallow better and so on.
I still dont have a diagnosis beacuse of my neagtive tests. Only the x-ray showed an enlarged Thymus. At the moment I eat Mestinon 50 mg x 4-5/day. And it really helps me. I still cant work, but I can managed my daily things. Now I have thousands of thoughts about the future. I find it so hard to live with this disease, it so unpredictable. I can feel worthless sometimes, it is so much I still cant do. And its so isolating, have to be at home so much. Because of the negative testresults my doctor want put me on anything more than Mestinon and im really worried about that. Is that really enough?! Its so hard to not have a real diagnosis, it feels like the doctors dont really take it so serious. But my symptoms are really serious. Specially the heavy chest and shortness of breath, I hate that feeling. I dont know if I ever can go back to my work as a nurse, its so heavy! My doctor dont give any answers, he just said - its up to you. You are young, and its a pity if you cant work. And your diagnosis is not clear yet.
Im so tired of this. I just want all the help I can get and my life back! This isnt a choice. Why do the doctors put so much guilt on us?! I have read on this forum for a long time now, and it really hold me up in my darkest moments. In Sweden, which is a little country, its hard to find other people in the same situation.
Sorry for this long text, I just wanted to share my story because I feel so alone and depressed. And I have really doubt on my self during this trip. Its so terrible to hear - its all in your head!
Im a 32 year old living in Sweden. I have suspect MG. My symptoms started last year, in aug. It all come very sudden and my legs just gave out on me. I had been tired a long time before but didnt know why. Maybe stress I thought. I also had some problems with my eyes but I have linses and thought that was the problem. The legs came back to normal after I have rested. When it started in my arms and hands. Im a nurse and my work is very physical. I began to drop things and couldnt hold and lifting. Everything was heavy! It was sometimes difficult to walk, my balance was bad and sometimes my legs just didnt come with me. In january I have to quit working and stayed at home.
I did go to the doctor already in aug, after my legs had gived out on me, but he said it wasnt anything special. In nov. I did go to the doctor again but they didnt do anything. In jan I tried to work 50 % but after a couple of hours I couldnt even walk around. The doctor didnt believe me and the symptoms came and disapeared, so confusing. In march I was finally send to a neurologic who immediately mentioned MG. They tock the bloodtest - both Achr and MUSK - both came back negative. I was send to EMG och RNS - both normal. Then they did a SFEMG in my right overarm. At the same time my left eye started to droop in the afternoon, I had doublevision and couldnt focus and started to have this heavy feeling in my chest. Even my neck sometimes just fell because I couldnt hold it up. All this test was negative and the next doctor I meet said that this is probably not MG.
I april I was very bad, my legs gave out on me, I fell at home and couldnt get up and I have problem with breathing. I was at the emergancy clinic and two nights at hospital, but the doctor just said - this is absolutely not MG and nothing else. Its all in your head. It was so terribal, I know something was very bad with my body and no one listening. I couldnt even walk on my own but they didnt care. I was in tears and they sent me home. Here in Sweden you cant change doctor very easily but my family started to tried to get me to another doctor. I live on my own, four stairs up and I couldnt managed it. I fell in the stairs, couldnt carey my food and so on.
During the summer I become much worse. I couldnt stand the heat. I had trouble to chew and then even to swallow. It was like a lump in my throat. I was at the hospital again and they took an MR - also negative. In aug. I finally came to a another doctor at the biggest hospital in my area. He said all this pointed to MG but the test are still negative. In sep. he put me on Mestinon 30 mg x 4. I immediately noticed a different. My legs became stronger, I could swallow better and so on.
I still dont have a diagnosis beacuse of my neagtive tests. Only the x-ray showed an enlarged Thymus. At the moment I eat Mestinon 50 mg x 4-5/day. And it really helps me. I still cant work, but I can managed my daily things. Now I have thousands of thoughts about the future. I find it so hard to live with this disease, it so unpredictable. I can feel worthless sometimes, it is so much I still cant do. And its so isolating, have to be at home so much. Because of the negative testresults my doctor want put me on anything more than Mestinon and im really worried about that. Is that really enough?! Its so hard to not have a real diagnosis, it feels like the doctors dont really take it so serious. But my symptoms are really serious. Specially the heavy chest and shortness of breath, I hate that feeling. I dont know if I ever can go back to my work as a nurse, its so heavy! My doctor dont give any answers, he just said - its up to you. You are young, and its a pity if you cant work. And your diagnosis is not clear yet.
Im so tired of this. I just want all the help I can get and my life back! This isnt a choice. Why do the doctors put so much guilt on us?! I have read on this forum for a long time now, and it really hold me up in my darkest moments. In Sweden, which is a little country, its hard to find other people in the same situation.
Sorry for this long text, I just wanted to share my story because I feel so alone and depressed. And I have really doubt on my self during this trip. Its so terrible to hear - its all in your head!
So sorry to hear your story but welcome to this wonderful place! I am going through a similar diagnostic process. I am negative for AChR, MuSK and LEMS antibodies. My EMG, RNS and SFEMG all negative too.
My thymus was normal on my last scan, though. Have your doctors decided to investigate your enlarged thymus?
I am in Canada so can understand the problem with changing doctors. I waited over a year to see a neuro who specializes in neuromuscular diseases. I know only one person in my small city and she is considered cured, by the local neurologist who told me 5 years ago that I didn't have MG.
I've had to make a career change in order to survive. I used to do a better paying lab research job but the carrying and walking was too hard for me. Now I do a desk job and now that I am on Mestinon have many fewer problems with talking on the phone or to students.
Have you looked into other kinds of nursing work that is less strenuous? Here in Canada we have nurse practitioners, telehealth nurses and nurses working in administration or as patient advocates. Many of my nurse friends with bad backs have tried these options.
So take care and more people will weigh in soon. It is American Thanksgiving this week in the US so the forum is a bit quiet but there are lots of Canadians and UK folk here too. You are not alone!
Flutebell
Sorry my english isnt so good. Its much easier to read than write :)
It feels so good just to know im not alone. Can you live a ok life now with medication? Do you take anything more than just Mestinon? How much do you take?
I think its so strange why the doctors keep telling us that MG always shows up in the test. Before the test, MG was only a clinical diagnosis so I cant understand that.
The doctor said that my enlarged Thymus maybe was related to my age, but I dont know.
I think much about the future and are pretty sure I have to change to something less physical. Maybe even a deskwork. A nurse can do many things, but its not a very good job here in Sweden. We have much problem with the working situation for the nurses and the paying is poor so the few not physical jobs are very lucrative.
In the moment I even have problem sitting for to long since my back and neck get so tired easy, but I hope the new doses of Mestinon 50 mgx5 will managed that.
/Moortje
That Mestinon helps you is a pretty good sign that you do have MG as it doesn't do much for any other condition.
One test you can try yourself for MG that is pretty accurate. When your eye is drooping, put an icepack on it and hold it for 2 minutes or so. In about 80% of MG patients their eye will be normal for a short time afterwards ( example http://www.scielo.br/scielo.php?pid=S0004-282X2008000100025&script=sci_arttext )
The enlarged thymus also points to MG.
One of our members here recently passed away from pancreatic cancer. She had negative tests for MG, but mestinon helped her too and she had the MG symptoms . Sometimes the symptoms of MG can be brought about as our immune system ramps up to fight cancer. So, you should have a cancer screening too.
It is difficult to get doctors to give a diagnosis with symptoms only as the symptoms are somewhat common to many conditions other than MG. They like the hard test results.
Good Luck
(by the way, my great grandfather, Carl Martin Hanson came from near Stromstad, Sweden to Wisconsin, USA. We visited our 3rd cousins still living on the farm in nearby Skee. Looks a lot like Wisconsin and Minnesota there).
I spent a lot of time researching MG, thymus, etc on the internet so I could actually understand things and disagree when my doctor stated something I knew was questionable. That was at the family doctor level.
When I found a neurologist experienced with MG--she was excellent. However, as I had a positive antibody test, there was no difficulty with the diagnosis.
Good news is there is hope.
The treatment for us is up to 90 of mestinon every 4 hours. We get our thymus removed and go on cellcept and prednisone. Then you will be able to function.
At least that is my treatment.
If I was you I would call every neuro in your country till you find one familiar with MG and negative test results. Be sure to tell them you are having trouble breathing.That is a huge red flag and will get the attention of anyone who knows what they are doing. You can also see if you have any MG foundation in your country. They should be able to help you too.
You are in trouble and you need to find someone who knows what they are doing.
This is mandatory. Do not waste another minute worrying about the docs who aren't helping you and put your energy into finding a doc who will treat you for MG without proof.
If mestinon is helping you that is a huge sign that you have MG....your docs just aren't smart enough.
steps make me worse as well as driving and lifting.
It's terrible what we have to go through to get treatment. Maybe keep a diary of your daily symptoms and take pictures or videos of yourself. I hope someone listens soon. We are here for you. Rest is your best friend. Keep in touch !
Moortje you might check to see if there is a doctor who still preform this test. In my case it was a injection & within minutes I was able to walk, talk, my eyes opened up. I was even able to eat my lunch that day. It is a short acting drug, told it would only last about 10 minutes. It lasted for me about 30 to 40 minutes.
I have had a thymectomy, thymus was enlarged, no cancer. I had 25 years of complete remission till a car accident in 2011.
You have come to a wonderful group of people for support.
Take care of yourself.
Debbie
I am taking 60mg of Mestinon four times per day. I had been on three a day for the first year but have been having problems overnight so have added an extra dose at bedtime.
I can tell that the disease is worsening but it took a full year for MuSK and LEMS testing, which I expect needed to be done before starting more aggressive therapy. I am working on sleep and overnight oxygen problems while I wait for my follow up appointment with my neuro in February.
I have a low white blood count and a calcium disorder so am hoping I won't have to go on high dose steroids or immune modifying drugs (which would lower the already low blood count). I'm calling this my "honeymoon period" as I have a tentative diagnosis and a reasonable therapy for now. A year ago I thought I had ALS and wouldn't still be working by this time this year. Small steps, lots of waiting, keeping good records of results.... on it goes!
Flutebell
The doctor I go to now is the MG-expert in my area, he is a neuromuscular expert. I came to him for a second opinion after my parents had demanded it. And he said it absolutely pointed at MG and now other disease, but since I dont have the antibodies or even a positive SFEMG in spite of all my symptoms, he seems very concern. He said only respons to Mestinon isnt diagnostics because it could just gave the muscles more strength in generally?! I have asked about the Tensilon-test but they want do it in Sweden anymore. I talked to him yesterday and he said I could take Mestinon symptomatic as long as I think it works for me. He could even give me stronger doses, but will not put in cortison or something else at least not at the moment. He said "we havent confirmed a serious muscledisease so the prognosis is good". My answer was "but I still have my symptoms". I dont know if he thinks it just will disappear by itself or what. He is not very easy to talk to. I have been very relieved about the fact that he put me on Mestinon in the first place since the other doctors have refused. They said it was not a real weakness, it was functional weakness, and therefore the Mestinon will only give placebo-effect.
I have now eating it since sep. and it cant be placebo. It really helping me, I still have symptoms but not in the same way. Before I was in my home, in the bed or in the sofa, nearly all the time, now I can do little things during the days etc
I have even write to the leading MG-expert in Sweden and she answer that "real Myasthenia" will show up on a SFEMG. It really makes me confused, is were also faked Myasthenia?
I have been at a rheumatologist, endocrinologist and infectologist(?) and they couldnt find anything. The rheumatologist also think this pointed at MG.
My B-12 is low and also my Ferritin and D-vitamin so I take mediciation for that now.
At the moment I have had four really good days and I hope so much its beacuse of the higher dose of Mestinon. Last week I was very bad, probably because I have take the influensavacc. It bringed out all my symptoms! With out the Mestinon I would probably have landed on the hospital!!
Im still very concern about the future. I have the next appointment with my dr in feb. My disease have really developed fast during this year and I have so many muscles involved. I really dont want it to get any worse. Im still quite young.
Rhanson: I did the ice test earlier this year and it was positive! My eye become normal again.
I also think its hard to not `overdoing. It feels easy to do so then you feel better. The days my body is good I just do a lot of things and then I have a bad day after. I cant really handled that. Then I overdoing it my back become so tired and my chest heavy and rest is the only thing that helps.
I just cant think how I should managed my work! I probably have to try to get back in the beginning of next year but it scares me. And Im afraid of being so bad as last weekend. It was terrible, just lying in the bed all day, could hardly lift my arms.
Its really a roller coaster!
My question is
If this was something other than MG for you ..how would they treat it. You need treatment.
You really need treatment.
yes...in bed many days we are.
If you are 33 you can get on the phone and get help as I suggested in my last entry. You may as well start demanding now...demanding will be your new way of life.
Find the nearest MG foundation and get their help.
Take action
You have to become your own advocate and really push to get good care with diseases that are rare like MG. I found a neurologist who cared for MG patients as her main practice.
MG is a failure of communication from nerves to muscles. The muscles are fine, just can't get the messages from the brain to do things. Our immune system blocks and destroys the receptors on the muscle so the messages are blocked.
Mestinon works to temporarily help the messages get through. If our immune system continues to attack the nerve/muscle connection, then mestinon will eventually not work as there are not enough receptors left and we go into a "crisis" where we can't breath without machine assistance. That is why most of us have had to take something to slow down our immune system (prednisone being the usual first medication).
When I went into remission from MG about 20 months ago, I found taking mestinon made me very twitchy and my muscles cramped--not stronger.
Lycka till!
Have they tested for that?
It behaves very similar to MG because it is also a lack of proper communication between nerves and muscles. Just takes place in a different area of the neuromuscular junction.
Mestinon also helps most Lems patients, too. I take quite a bit if it, and could not do without it.
I agree with the other posters that your doctor is being rather closed minded about not treating you because you don't have positive tests. For the first six months all my tests were negative for mg and Lems. All EMGs were normal and even single fiber was normal. When I was in the hospital with still no diagnosis, but serious symptoms, I was retested and positive for Lems.
You have to keep pushing for your own sake. You can see improvement with the right treatments, but it can also go the other way if your disease is ignored by the people who are supposed to be helping you. Best wishes to you that you get the appropriate treatment, whether they have a name for it or not.