We understand. The MG itself can many times make your mind go into a sadder mode. The disease is chronic and can really bring us down. When you get correct treatment and start moving upward it gets better.
You are running into many docs who are not understanding what you are going through.
The only encouragement I can give you is
WE understand and
keep calling around till you find someone who understands. This is mandatory for you and your future.

Hello Moortje,
We DO know what you are going through! Many of us had years of doctors saying we "might want to see a therapist" for our "anxiety". I saw a local neuro who had actually seen a patient with MG and he missed it. He just stuck EMG needles in my legs and said I was normal.

The neuro that picked up possible MG did muscle fatiguing tests. Have you had anyone do that? She had me look upwards for 2 minutes. I don't have ocular symptoms but one of my eyelids did droop a bit. She also asked me to pump my arm up and down (like in the Chicken Dance) for 50 times but I only lasted 30.

Maybe you could suggest at your next doc that these tests need doing. We sit quietly at a doc's appt, sometimes after waiting 20 minutes in the waiting room, so don't look fatigued. One of my most obvious problems was when I saw a nurse practitioner for the first time and went straight in. She said "We'll wait for you to catch your breath" as I had walked from the car and took the elevator, not the stairs. That was certainly not normal for me!

Good luck and maybe see if you can get your vitamin D checked. Each fall I get weaker as the sun disappears here in Canada and even a slightly low D level makes me much worse, and sad as well. This vitamin really works as a hormone for me, not just a vitamin.
Flutebell

Many of us have had the same difficulties on our way to being diagnosed. We understand your feelings and empathize with you.

Initially my family doctor was sure I was just depressed and wanted to treat me with some SSRI's. I didn't take them.

I decided if I was depressed, it was because I couldn't do physical stuff anymore. So I didn't take depression medicine, even though ti was pushed hard as a solution to my "problems." I was lucky as I was already retired and secure financially.

Finally when my eye wouldn't stay open, the eye doctor gave me the ice-pack test and told me I had MG. Then I had a positive antibody test and a clear explanation for the physical problems so the doctors and my friends really believed I was actually sick. Before that I had almost come to believe that I had a moral flaw--no ambition rather than no stamina.

Lycka till

Yes we all UNDERSTAND completely what you are going thru...I went thru a year or more of that before was lucky enough to find a neuro who specilaizes in MG and diagnosed quickly and started treatment...Am a very anxious person anyway and went thru all those drs who said of its just your nerves!! cried everyday myself...Even though now I have the treatment plan I am having other issue that again am going thru drs saying its just your nerves..So its sometimes an endless cycle and Ann is right I beileve MG does take you to a sadder place sometimes and really brings you down..Im dont feel like the same person I was but at least the treatment did help my MG to stabilize...So I guess also my best advice is keep trying hard to find someone who will help and treat you!! Thats the first step, then can deal with the rest...I feel for you and hope you can find someone SOON...Not an easy journey but you can do it...we are all here for you..keep us posted..Hugs jacki

I totally understand. I am still in no mans land. Every doctors appointment leaves me in tears, regardless of going into it knowing they will not help me and send me on my way. It seems cruel how you can't quench hope. I also go through times of thinging that maybe I am just crazy. Lately I have found alot of my symptoms are brought on by the cold. So if I stay warm I feel alot better. It is all soo weird, I keep asking my boyfriend if he notices a difference or if it is all in my head. At times I feel like I am just imagining things just to try and get an answer. It seems we live in the perfect spot where no one cares. You are sick enough that it affects your day to day life, but as you are not dying and in imminent risk, no one cares to figure it out. It is beyond frustrating. But I think we must just keep fighting. You have to advocate for yourself. Haha become that annoying demanding patient that will not go away. Doctors keep telling me all sorts of things to make me go away, oh it is Chronic Fatigue, oh it is a non differentiated rhuematic condition. But all of those are just things to make me go away as they try and label me, yet won't give me any treatment. Head up my dear, and keep fighting.

Thank you, all of you, for your support and encouragement!
Its feel really good just to see the word "we understand you".

Ann - you have so right! The disease it self can make you sad and then all the stupid doctors upon that. Sometimes its just to much. But I will keep fighting for my future.

Flutebell - the first neuro I meet did fatiguing test and was convinced I had MG. My left eye didnt move properly and she could se that. Also my breathing, and the fatiguing in my arms, legs and neck. But then the test came back negative. The second neuro also did fatiguing test but with the negative testresult behind me he didnt thougth it was MG. The fourth neuro (who put me on Mestinon) didnt do this test and I found that very strange. Now he has nothing to compare with.
I have low vitamin D-leavel also so I eat that.
Also B12.

Rhanson - Tack :)

Jacki - thank you. MG is really a scary thing so its not strange if we feel us anxiously also! But to just blame everything at the nerves as the doctors are so glad to do, is unforgivably!

Bashley17 - so sorry to hear your struggle also! No mans land is a terrible place to be. And yes its really feels like nobody care!

I too have had these symptoms for years and have been told that I have MG before they do any testing then they test and everything comes back negative. I did have an EMG that came back saying there was an abnormality but the Dr doesn't know what it is. I have been officially diagnosed with Ocular MG by two different eye specialists. I am on Mestinon and it works for the eyes and helps sometimes with other muscles.

I have two close older gentlemen friends who both have MG. One was diagnosed 5 years ago and the other last week. The last one is still in Intensive Care. He has had the drooping eye like myself since birth but just last week started having signs of MG. I am so worried about these two friends but I now that they are getting help. They both tested positive for MG.

Has anyone else read that you can have MG but not test positive? I guess the Dr's will not give you anything else besides Mestinon for your symptoms unless you test positive. Both of my friends are receiving IVIG treatments which help them.

I am glad that I found this group and I know that I am not crazy, lol I had several neurologists tell me it was all in my head. Yeah sure, I can make my eyelid droop, I can make double vision occur and make my muscles give out without doing a lot. Doesn't everyone? lol

Take care,
Janice

I have a diagnosis and still find it difficult to express to people how I feel. I always feel like a hypochondriac. I don't try to explain this to people (other than my doctors) My husband is very understanding but I know that he doesn't understand either and if I told him how I feel every moment, he would tire of it. I found a counselor that I could just blab everything to and finally gave in and got on a low dose of Lexapro. I fought and fought any kind of antidepressant, but wow, I should have done that a long time ago. It helps a lot. But I still cry sometimes. Because its hard, and crying is healthy.

You are not weak for feeling sad. You are not a hypochondriac. You have these feelings for a reason, dont be afraid to feel them and you need to find a place to let them out. Take care of your physical self with rest, diet and doctors. Give yourself a break and allow yourself to not finish everything on your to-do list and find some support for your mental health. Our bodies react to our mental spiritual and emotional self without a doubt.

Wish you the best. Praying.

Leslie

I'll add to what Janice said above, in that It's funny that people think we can fake some of the symptoms of this disease. When my MG was bad my eyes were not straight -- they wandered all over the place. I called it "Igor-ing", because I could make one eye look at the wall and the other look straight ahead, like Marty Feldman's "Eye-gor" in Young Frankenstein. I would love to see somebody without MG be able to do that!

On the other hand, MG is very rare, so, just playing the percentages, a Dr. would be right in not diagnosing someone with MG right away. But, like Mr. Hanson, I was diagnosed with the eye-pack test, and put on prednisone and mestinon right away without a positive blood test (that came later). So somethings, like a postive response to mestinon, are just so hard to explain if a person does not have MG (Mestinon works for mitocondrial disease, so that is about the only thing I can think of.)

And crying is great -- it always clears my sinuses out! ~Joe

I totally understand your feelings about people not believing you. Like you, I sometimes had trouble believing myself, and sometimes still doubt myself.
I think what makes it hard for yourself and others to believe is the waxing and waning of symptoms. Sometimes I have good days where I almost forget I have anything wrong. I have noticed on these days, that I will forget to use my cane, but as I go walking off without it and begin noticing more weakness and balance problems, I am reminded that I need it.
Some days I pretty much stay house bound and don't do much of anything at all other than the bare necessities.
I used to cry a lot before diagnosis because of the sheer frustration of it all. Sometimes I still get frustrated because of lack of understanding on the part of medical professionals, but not quite as often as I once did.
Keep pushing forward and be determined to get someone to listen. Life will not become suddenly roses when you do get a diagnosis, but it does have a positive impact on your mental well being. Not that anyone wants a disease, but it's the validation of your previous statements that takes away a lot of your self doubt and feelings of craziness.
Best wishes in your journey.

I was in tears reading your post because I remember what it was like. I was told that i was just stressed. I was told that my problem was psychological. Every where I turned I was told that tests are normal...its in your head. Meantime I had to function with drooping eyelids, double vision, problems swallowing, problems speaking, a general weakness and eventually problems breathing. My first test for MG came back negative and I was told that I cant be treated for something when the test is negative. I landed in a hospital before I felt I was taken seriously.
I was tested again, this time for MuSK antibodies, and the results were positive. By this time I was in crisis and on a ventilator.
MG itself is a difficult condition to deal with. But sometimes the road to diagnosis is just as rough.
I understand the frustration of feeling as if ppl dont believe or understand. I personally feel that only some1 with MG can truly understand.
So whenever you're sad...go ahead and post. We're all here.

Welcome JcanQueen... It's so nice to have you here but wish it was under different circumstances.

Moortje81 - I don't know how long you've been working on getting a diagnosis but to put it all into perspective, the average MG patient struggles for a diagnosis for 6-8 years. That is because of all of the things that you are going through right now. It is a true struggle to make others "get it". Sadly, the thing that usually brings friends and family around to understanding this is a crisis.
I certainly hope that you don't have to go through anything like that before someone believes you. Also, bear in mind that some people will just NEVER get it.

Now for some things that might help with getting the doctors to understand what your life is like....
The best tool is a journal in which you write down as many details about each day as you can.
-------------
Example: Today was really hard but when I woke up at 7:30 this morning I felt okay. By 10 am my neck and arms were weak after showering and fixing my hair. I dropped a glass at 10:35 due to my weakness and had to go lie down. Fell asleep for about 2 hours and my weakness was improved. Had lunch at noon and had to run some errands. It was really hot outside and I could only get one of my errands done due to the heat and I got very weak. The air-conditioning in the car help a little but by the time I made it home I wasn't able to do anything until I rested. I tried to complete some simple tasks like balancing the checkbook but my vision was blurry and it was too hard to focus.....
---------
Information like that is priceless for our doctors. If you can have someone take video of you when you are at your weakest or when you are unable to do specific things that you use to be able to do easily. I use to do all kinds of things like build a deck on my house but now I can hardly hold a hammer much less drive a nail with it. Take selfies of when your eye is drooping or video of you with slurred speech. Any documentation that you can get on your day to day struggles will help immensely.

I don't know what kind of doctors you have access to but you should try to find one that is specialized in neuromuscular diseases. I don't know if any of the doctors you've seen are NM specialists but if not then you need to get it to see one that is. If you don't have access to a NM doctor then bring all of your own research on MG in to show them. They need to know that many MG patients are negative for all the antibodies and are either borderline or negative on most of the other testing such as EMG.

Most doctors know little about this disease (even neurologists) and they don't understand the idiosyncrasies that exist with it. To them, our complaints sound like all we do is sit around and wait for another thing to happen to us or like we are hypochondriacs. That alone is enough to make you feel crazy so it's no wonder that we have anxiety issues.

The last thing that I will say is that you need to find humor in things. I know that sounds super crazy but it does help to curb the depression. Picture it..... I have to drag one leg behind me, my right eye is 3/4 shut so I can't see the crosswalk count down, my balance is all over the place but I also need to get to the other side of a 6 lane road without being killed. I mean that picture is hilarious in my head so I can only imagine what others are thinking. I have to laugh at that kind of stuff. The shear ridiculous nature of it all makes me laugh. Yes, it's a huge struggle and your day to day life is near impossible to get through but try not to take it too seriously all the time. You have to make an effort not to over think things which is what increases our anxiety and is only going to give the doctors more reason to blame it on that.

Okay, I think I've done enough typing for now. My neck and arms are getting too weak. I hope that things improve for you very soon and that you find the one doctor that will believe you and know just what needs to be done. I will say a prayer for you. We are all in your corner and we are here for you.

Hugs my friend.
Angie

Thank you all! Your support and thoughts and encouragement mean so much for me!

And yes the MG itself is really a battle. Its unpredictable and scary and I dont always understand why it suddenly flares up. I do try to look at it all with some humor. It often helps, I agree!

I have only been struggling for a year but that year have totally change me. Meeting so many doctors telling me Im depressed, have angst, have lost my perception about my body, Im not really weak, its just in my head, its functional weakness, the medication will only be placebo and so on. It have affect me in my deepest, and I really admiring people who go throw this for years and years and still can hold them up.

I had meet a doctor who is an neuromuscular expert. He put me on Mestinon, but now he doesnt want to go any further. I think he just put me on medication to get rid of me actually. He said everything pointed at MG, but my test are negative and therefore he want treat me with anything else than Mestinon and he will not confirm the diagnosis. He says that only respons to Mestinon and the clinical picture is not enough to say its MG.

I will meet him again in february so then I should really prepare myself and fight again!

Oh hun, you can't say that you have ONLY been struggling for a year. A year is a long time when every single day is a battle with yourself and others. I hope you didn't take my comment as me trying to minimize what you've been through in the last year. My only intention was to make sure that you know that you may be in for a several years struggle to get properly diagnosed and treated for your symptoms.

There are also people among us that were diagnosed within a week or a months time. It really depends on your access to doctors who really understand the disease and have experience in treating it. I would also ask your doctors if they've actually treated patients with this disease and how many cases have they had. That would tell you more about their familiarity with MG. If they've only treated a handful of people they probably lack the desired experience to treat you appropriately.

I re-posted a funny thread that tons the wonderful folks here contributed too quite a while ago. It is super funny and everyone's comments and funny little things will help you see what things they go through. When I first posted it I had just been diagnosed about a year before and I really had no idea just how much others dealt with until I read that. I was so unsure if this is what I really had until I read that and it sealed it for me. There was so much in that post that I go through daily and after seeing that I knew it was MG. It's called "You might be an MG'er if". It's really long because so many of us added things to it but you will laugh until you cry when you read it. Maybe you can even add your own comments on it.

Good luck dear and I hope you get your answers very soon.
With love,
Angie

Hang in there Moortje81!
Yup - a lot of us have been through the same thing.
Just so you know: I forget the percentage, but something like 15 to 20-percent of us, never test positive for any "typical" MG test.
And there is a set of people who have myasthenic-syndromes, which is also a neuromuscular problem, but has a different treatment from MG.
It's true with a lot of MG people: if Mestinon helps you, that's almost considered a diagnostic test for MG, by itself.

... Ross
... yes, this a great group!