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!
Sorry to hear that all you have gone through. I used to work as a nurse but due to MG and some other things I am retired.
I understand what it is like not to be able to care for yourself but hopefully it will get better.
good luck
Chuck
Rhanson - I really dont understand that either. I have read somewhere that sometimes Mestinon can help temporary if you have ALS but otherwise I have not seen any other condition. Even if my doctor is the expert here in south Sweden, I dont think he treats very many because Sweden is such a little country. I have understand that he is good on treating MG-patient then they have the bloodtest or the positive EMG. But no one i Sweden seems very willing on treating doubble seronegative MG because they think it doesnt exist. The two leading expert in the country just saying it always shows up on the EMG. I think its just lack of knowledge.
Actually one of my SFEMG was borderline, I have increased jitter in 2 out of 21 pair. Isnt that abnormal?
Limpnoodle - I have not been tested for LEMS. I even think its strange that they dont take a musclebiopsy. Isnt that a way to make a diagnosis?
It all started last year in summer when i felt my legs were detached from the body and very heavy.I was working on a desk so i related it to this...but still..IT DIDNT FEEL NORMAL (and im sure everyone here knows what I mean by this), i went to a neuro she gave me an antidepressant and magnesium, in some time this faded.
Later in fall i noticed that my eyes look droopy and later it went to my shoulders. Again comments that is stress and depression..but still - it didnt feel normal, i never had this before. When i was sitting at work i felt like my body is on sleepy mode, my moves were slow and i become clumsy, when washing dishes or doing laundry ,my voice got softer and one of my colleagues said ''you dont look very well". I knew sth s wrong with me but i thought its becoz of the pills i took for a very short time or i thought its theird withdrawal. In 2 months i was ok back to normal.
Forward to 2014 in the beginning for some reasons i had to take antidepressants again, they made me numb and i stopped them....i was feeling bad all the summer, feeling like sick n tired.
This fall (again fall) my eyes dropped again all my face dropped like even the jaw sometims and i looked older than i am. I had terrible headaches and I realized the nightmare from 2013 is back but much more severe, i couldnt get up from the bed for 2 weeks. I was shaking sometimes and my body is again stiff, clumsy, washing the dishes seems very heavy, picking a glass for tea made my hands tremble.
A neuro told me is stress, another one suggested MG, I made and MRI of brain which came out ok because I thought I have MS.
Looking by the symptoms it can be many things. Im not sure somebody will ever tell me what this is. I asked a document from my doctor to go to the hospital and he said he s fed up with me and im hypochondriac.
I cant keep my head up always have to put my hand under it, my posture changed and i bent. I wont write all these freaky symptoms it ll take pages. Nobody believes me sth s wrong and im very tired of this, I can make the difference between stress and sths wrong. Im not chypochondriac, I just havent met the right doctor.
I dont feel like my self anymore, im not the person i was, and now i realize this thing must have started long ago and affects my mood and psychology too. Even my handwriting is disappearing.
The only thing I know its this is not fair. I cant even make anymore plans for my life, I dont know how I ll wake up in the next morning.
Next week im going to a neuro hospital and... I just pray I can somehow lead a normal life whatever that is.
I wish luck to all of you and im sorry for the long letter.
xxx
I wish luck to all of you.
Sorry to hear about your struggle. I can really understand your frustration. Its so terrible to hear - nothing is wrong, its stress, depression, and so on, then you know that something really is wrong!! To hear that so many times really make something with your self.
You havent tried Mestinon yet? That really makes a difference for me. Without that I would thought I was absolutely crazy! Now I know my body need this medication because something is wrong.
I hope the next neuro will take you serious. We have to find the right doctor but its so hard to do.
I also have problem with handwriting, my hand just dont move properly. My left eye droops somedays. Not totally, but it really are a difference. Even my right eye droop when im really bad. Sometimes I can feel a weird thing around my lips, like a numbness. Even the corner of my mouth droop, and my smile is a bit crooked. At some point I also have problem with move my mouth. Its harder to speak. Just subtile but i can really notice the difference.
Can you work now?
i also have weight in the chest and i feel like a bag of potatoes sometimes and its awful becoz im 55kg only and im 175 tall. people say im pretty etc but if i ever felt pretty i dont anymore, i feel some old tired creature at moments, like invalid.
this thing started end of september,now im better, but since this thing hits me for second time there will be a third too obviously, so im going to the hospital in monday. i will update you next week when im back.
i have read about mestinon but i havent tried anything till now. after taking antidepressants i have now phobia from pills becoz of the side effects, i dont even take pills for headaches, only if im dying from pain. i wish i never take pills but...
this is for now, take care and see you soon.
x
I had to have thymus removed. It is part of MG treatment especially if there is thymoma.
I would think enlarged thymus would have negative MG relationship also.
and from what I understand.....the younger you are the more positive results you get from having thymus removed.
Dafni - good luck next week!
i feel my chest heavy like stone again , cant take enough air, my head feels still heavy on my neck and im getting tired and stiff. im really tired of all this and i cant even describe it. im tired of telling me i need a change in my life etc. thats true, but lord i wish this was the only problem.
i wish to all happy holidays altgough i really dont care for xmas and new year. i have one last hope that some miracle will hapen soon because i feel lost...
Wait.... 3 weeks later, symptoms returned.
The reason you'll need a confirming diagnosis (at least in the U.S.) will be for your insurance to pick up the tab for the more expensive treatments for MG if necessary.
No worries, I'm still "negative" on all the test... yes, all of them.
I'll warn against using in neck braces and other 'crutches' when you are overly weak or tired. Just rest.
Relying on a braces is only going to weakened your neuro-muscular structure even more.
Matt
if a lot of us are not diagnosed whats the prognosis for this? what other disease can be similar to MG. i really dont know if i can lead normal life, i cant do heavy jobs, i dont even know if i can handle 8-9 hours job in an office, and what? WHAT NOW?
after new year i ll try to find some meds for this and see if they help. i dont see what else i can do.
Hate to hear you're struggling. It sounds like you need a strong support group and a good plan. It concerns me that you're more worried about side effects than the benefits of the medicines.
MG can progress within the first two years to a generalized form (taking over more of your body) but there are studies that taking Predinsone can suppress than progression.
Also, it's important to understand out "side effects" are determined in the medical studies. Just because a side effect is listed doesn't always mean that the medicine is the direct cause AND it doesn't mean that you're going to have the same negative effects.
Either you're got to overcome your anxiety and try some med regimen or you're not going to get better. I have taken Mestinon w/ NO negative side effects and I take predinsone on cycling basis.
Hope is not going to help. If you're suffering from depression and your posts sound as if you're down, please seek help immediately.