Hi!
Iīm 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 didnīt 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. Iīm a nurse and my work is very physical. I began to drop things and couldnīt hold and lifting. Everything was heavy! It was sometimes difficult to walk, my balance was bad and sometimes my legs just didnīt 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 wasnīt anything special. In nov. I did go to the doctor again but they didnīt do anything. In jan I tried to work 50 % but after a couple of hours I couldnīt even walk around. The doctor didnīt 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 couldnīt focus and started to have this heavy feeling in my chest. Even my neck sometimes just fell because I couldnīt 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 couldnīt 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. Itīs all in your head. It was so terribal, I know something was very bad with my body and no one listening. I couldnīt even walk on my own but they didnīt care. I was in tears and they sent me home. Here in Sweden you canīt 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 couldnīt managed it. I fell in the stairs, couldnīt carey my food and so on.

During the summer I become much worse. I couldnīt 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 donīt 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 canīt 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 canīt do. And itīs 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 iīm really worried about that. Is that really enough?! Itīs so hard to not have a real diagnosis, it feels like the doctors donīt really take it so serious. But my symptoms are really serious. Specially the heavy chest and shortness of breath, I hate that feeling. I donīt know if I ever can go back to my work as a nurse, itīs so heavy! My doctor donīt give any answers, he just said - itīs up to you. You are young, and itīs a pity if you canīt work. And your diagnosis is not clear yet.

Iīm so tired of this. I just want all the help I can get and my life back! This isnīt 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, itīs 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. Itīs so terrible to hear - itīs all in your head!

Welcome Moortje.

It seems like you really should talk to a surgeon about taking that thymus out.

Welcome!

You have much company here - most know first hand much of what you're going through. I would be quite concerned about the thymus enlargement. You need another opinion sooner -rather than later - on how to treat it.

Thank you all for your replies!
I do think about the Thymus a lot, I canīt think it can be normal to have it bigger than usual. My doctor called it a Thymus-rest. Is there a difference? Isnīt a enlarged Thymus very typical in MG?
I think I have to keep pushing for a diagnosis and better treatment. In sep. then I finally get the Mestinon I was so totally exhausted after a year with fighting, so I just felt relieved and was happy about getting something that makes my life easier. But I do worry about the future. The illness is still in me, even if the Mestinon helps with the symptoms. It feels scary!

Did they do any antibody levels? ACHR or MUSK? If not, please request them. The Thymus should definitely be evaluated. A lot of MGers have hyperplasia of the thymus. Once removed, most see improvement of their symptoms and sometimes remission.

good luck
kathie

Hi Kathie!
Yes they have test both ACHR and MUSK - both negative.
I will ask my doctor again about the thymus.
Last night I was so heavy in my chest. Hate that feeling.

Hi, Moortje. Welcome!

I find it ironic that you are in the country of the man who invented the SFEMG, and yet you can not receive proper care!

http://www.sfemg.info/Team.aspx

How long have you had symptoms? It might be possible that you have a CMS (congenital myasthenic syndrome). Or MG. Or LEMS.

I'm sorry that you weren't taken seriously. I laughed out loud when you said that the doctor said that it wasn't anything special. I wouldn't consider MG to be "special" either!

Antibody tests can fluctuate. There are both circulating antibodies (found in the blood) and tissue bound antibodies (busy destroying tissues). A patient can have a high antibody level and a negative SFEMG or have no antibodies and have a highly positive SFEMG (according to an MDA director/MG expert I saw).

It seems as though your weakness does fluctuate, is the right? That's most indicative of MG/CMS/LEMS.

MG double vision is called "binocular," and, when you close one eye, the double vision goes away. Have you tried doing that?

You can see a neuro-ophthalmologist for tests to determine if you have fatigable ptosis (drooping eyelids).

I highly suggest that you see a pulmonologist as soon as possible! I'm frankly very concerned about your breathing. You sound as though your oxygen saturation could be low. Have they ever checked your O2 levels with an oximeter?

What about pulmonary function tests, including MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure)? Those tests show how well you're doing at breathing in and out.

A pulmonologist can also do an arterial blood gas. They might do an overnight oximetry to see how your O2 is while you are sleeping. It can drop dramatically in MG patients who aren't doing well (or in sleep apnea).

To say that you don't have MG simply because you don't have positive test results is nonsense. Did anyone say if you are clinically weak, after a neurological exam? MG is a clinical diagnosis backed up with tests.

Do you have copies of all of your test results and doctor notes? If not, get them.

Stay the heck out of the hot weather, because that can make MG much worse! Some drugs can, too. You can find more info here:

www.myasthenia.org
www.mdausa.org

You need more help. Not being able to swallow, breathe, or move well is an emergency if you have MG. You can't know for sure how badly you will become or how quickly that might happen. Here in the US, we dial 911 for an ambulance to get us (if a MGer is smart, that is!).

They can check your O2, do an ECG (hypoxemia is hard on the heart and brain), do an arterial blood gas, breathing tests, etc. In case an emergency room doctor stares at you, not knowing what MG is or what to do about it.

What else can we help you with? I really hope you will receive more care soon, and have more tests to better define what's going on.

Annie

Hi Annie! And thank you for your answer!

Perhaps itīs just because I live in the country of the SFEMG-man that the doctors are so totally convinced that you have to had a positive test, otherwise itīs not MG

The first neurologic I meet did fatiguing test and notice weekness both in my left eye, in the legs/hips, arms/shoulders, neck. I could hardly walk out from the doctor on my own. My head just droop on the side. I lost my breath.

My doublevision do go away then I close one eye. I have mild ptosis, often in my left eyelid, and it comes and goes. Sometimes I even have weakness around my mouth. It feels a bit like a anesthesia. Very strange and it can make my salivary to run a bit or it can feels hard to talk.

And yes all my symptoms do fluctuate.

They did something called PEF here in Sweden. I blow three times in a little flute and then they could see my diaphragma get weaker for every time.

This doctor was convinced I have MG, but then the test came back negative and everyone just change their minds. CMS or LEMS havenīt they even mentioned, but I know it exist.

They have taken my bloodtest twice and even the SFEMG. The second time I had increased jitter and blocking in 2 out of 21 fiberpair. But they said it was normal.

They have check my O2 at some point, it was ok around 96. Only the pulse was 130. But they always think itīs anxiety.

My symptoms started around august last year. I first went throw a long period of low fever and lot of infections around 2011/12 and then I was not my self. I was so tired. Also have some problem with my eyes. It was often foggy. Then the weakness just came, in my legs. At first it went away again for two months, but then it begin in my hands and arms and the legs again. I have always walk a lot, and sudden I just couldnīt. My legs became heavy and stop working. My balance became bad.

I have order out all my journals and just now I am waiting for the last one to come.

/Mari