I also feel that I can't trust my body! I am in the new stages of this MG diagnosis, and my neurologist just told me that my diagnosis is "not a slam dunk". I was negative for all antibodies but had a positive single-fiber EMG. The Mestinon and IVIG helped a lot, and so it somewhat confirms his diagnosis.

When I was admitted to the hospital last month for slurred speech and problems swallowing, I was very anxious about everything. I know just enough in the medical realm to make myself crazy! Yet, not enough to figure my own self out. Neurology must be such a frustrating field to be in! It's all wait, wait, wait. I did want to let you know that I was told by the neurology team in the hospital to "see someone" to get my anxiety "under control". I was told that anxiety was clouding their ability to assess me neurologically. Have any of you heard that?

I can't say that I have heard of that although anxiety can produce similar symptoms to a lot of illness ( or vice versa depending on which way you want to look at it!) when I went to the Linden Method they told us to seek medical advice for our symptoms but that once any illness/ disease was ruled out to work on the anxiety - which I religiously did. The problem with anxiety is its s little like MG - there is no magic pill, dhat works for one won't always work for another. Medications can help but usually SSRI's are used and they are generally effective when anxiety is a result of depression. If you have anxiety without depression (or at least depression was not the primary cause) then CBT, counselling and othe therapies tend to be more successful. I was told by a counsellor that my anxiety stemmed from me liking to be in control - I had counselling when my symptoms were virtually gone or in remission and she said that my illness had triggered the anxiety because I couldn't control it/understand it/be able to deal with it as I had no diagnosis.

I'm not sure if that helps but only you know whether you feel this is a caused by your MG or if you feel there is something underlying. Anxiety is a vicious circle once you get into the anxious thinking and doubting yourself. Don't bd bullied into taking the medications if you are not happy to do so there are lots of options out there that have the same - if not better success rates and I know here in the UK they are starting to explore other options and acknowledge anxiety isn't a simple as they would like it to be.

Good Luck - let us know how you get on.x

Hi: I am currently taking Mestinon, 180 MG timespan, twice a day. It is hard to say precisely, but I would guess that the medicine gives me about twenty to thirty percent more muscle strength, for four to five hours. I am recently diagnosed with MG. I am still coming to grips with the reality that I can no longer rely on my muscles for strength. I've noticed my coordination is not as good as it was also. Hope you find answers and better days ahead. Take care.

I was Dx last August. I am on 15 mg of Prednisone down from 20 mg. I take Imuran and at the present I am not needing Mestinon, although I do get tired. I am able to work every day and do some other activites as strentgh allows.

I can not make plans, because I made the mistake and then I just couldn't go. I bought my husand tickets to a concert and then I couldn't get off of the sofa to go....very dissapointing.

I try to look at the positive things about everything. It could be worse for me. Most days I feel ok. with a few sparkle days inbetween. Some days I feel horrible, like Sunday, and I had to go go go all day. I have had to miss special functions with my kids too.

Like Pooh said or was it Piglette... "Think Happy Thoughts"

Stick close to this group. They have been a great blessing to me, as they will to you. Keep in touch.

Barbel

MG rarely is diagnosed until after we have had problems for years that that have been confused with almost everything else that could be happening. I had breathing problems and went through extensive tests with the result that I was just "out of shape" and needed to get into an exercise program (that I wasn't able to do).
I had decided it must just be my inability to get myself motivated, and it must be all my fault.
Then last May, I got double vision and one eye went half shut--and my eye specialist said "probably Myasthenia Gravis" and order an antibody test which was positive--so an immediate diagnosis of MG.
Six months of mestinon and prednisone put me into remission of all of my MG symptoms, and then 6 months of tapering off of prednisone left me in remission without medications -- at least for right now.
It was a big relief to have a diagnosis and my doctors switch to treating my MG rather than my mental state. Of course my mental state was due to my actual physical inability to function other than at a very low level -- no breath, no stamina, etc.
Hell of a lot better being sick in the body than thinking I was mentally screwed up. When the prednisone put me in remission, it was still not normal as prednisone itself messes with the mind and body. Now 100 days off of prednisone, I have glimmers of normality, or lost vitality and ambition--and life is again quite wonderful.
Good Luck

My MG progressed slowly and the last 35 years or so I had been seeking answers. I would try to find out why I couldn't run, then swim then hike, and go through all the testing about every five years for heart disease etc., Exercise induced asthma was one diagnosis which I never accepted. Then my father got MG and I finally got the eye problems and the neuroophthalmologist made the diagnosis. I was never told to my face it was anxiety. I don't think I saw anyone that brave! Except for the weakness they never elicited, I was stronger than they were. They did do the blood tests for MG, but they were all negative.

It was my ophthalmologist who kept me going those last years and sent me to the neuro ophthalmologist (who are often the heroes, especially for those of us seronegative). At one point when I asked for a differential diagnosis, I was told MG or nothing. Since I knew it wasn't nothing, I had my diagnosis and since there is treatment for MG and not for nothing, I asked for it and responded. It was thrilling!

Treatment for MG is not magic and may take a while to be worked out, Some of the techniques you can learn to deal with anxiety will help. It's a scary disease, but everyone's anxious when you can't depend on your body to do what you tell it to do, especially when it is breathing. Since with MG you can't depend on your body to misbehave on cue and the neurologists often do not test you to your limits, many of us have been in your position. You are not alone here! b.

I think I have learned to accept the bad days and the good days the same. At first when I started treatment, and I would have a super day or two all the while hoping "this is it, I'm better" then I would go down hill from there and get worse, it seemed. Yesterday, I felt so "human normal!" I worked all day And then went to the grocery(a rare thing) then came home and cooked a simple dinner and started dinner for tonight . Then I picked a tickle fight with my 18 & 19 year old. :-)
(Tickle fights take a lot of energy). Tonight I can hardly move. I probably over did it. I don't have the emotional lows like i did when i first started treatment. it doesn't mean that i don'ti get down , Because i do. I guess it just learning to accept MG as it comes.

The neurologists need some education on dealing with the bell curve as it pertains to patients' baseline abilities.and on dealing with a disease whose definition includes the term fluctuating.

When I got weak of spirit, I would wonder if I was right about my diagnosis, but then the eyes would close and I'd see double. Like b said, the list of symptoms eliminated all but MG or LEMS. Anxiety doesn't cause MG symptoms.

In fact, historically, doctors have nearly always been wrong when they blamed disease on anxiety and depression. They need to keep posters in their office that show a timeline devoted to when illnesses were attributed to demons or psychological problems and when the illnesses had a cause identified. The ship of fools is getting smaller, though not small enough.

Oh my, you bet I can relate. In fact, I never had anxiety before. It's really sad but I believe that the constant negativity that is put in our head by doctors who choose not to believe the information we provide them is what causes our anxiety. (Sorry for the run on sentence.) My anxiety began when my thyroid issues started and not one doctor would listen to me and my experiences. I was told repeatedly by numerous doctors at places like Duke and UNC that my blood work was all normal and I must be depressed. So from there my anxiety began. You know when you can only crawl to the toilet from your bed and your husband has to damn near carry you up to bed at the age of 28 it's not in your head. I kept telling myself that I'm just exaggerating, and maybe I should be more realistic in my delivery to the doctor but when I did that the doctors would say, "well it sounds like you are managing just fine". There was no winning so I was back to square one and had no choice but to doubt myself. I would wake up in the morning and force myself to exercise with my husband and watch my food intake down to the last crumb. My husband would lose 30-40 lbs and I would gain 20. All of that despite the fact that I was cooking all of the meals and following weight watchers. I kept food journal and exercise logs... you name it. There was nobody more dedicated to the cause then I was but my efforts were all discounted to still eating too much and not exercising enough. To this day I struggle with my own emotions as they relate to how I'm feeling. Any sane person would, I think. After being told that I have asthma and knowing that I didn't I started to doubt the doctors too. So I actually thought that I had nobody to trust and I'm sure many on this site have felt the same way.

When my neuro diagnosed me I still questioned it. I wanted to believe it. Not because I wanted to have MG but because I wanted to have something that was NOT all in my head. I am also seronegative but had a positive EMG. Even with that though I wasn't entirely convinced. Then I started doing my own research and got to understand MG better. I took a long look at my history and childhood but more importantly when I began to have symptoms. I was able to connect so many unexplained events to classic MG symptoms. Things that are so off the wall and random that they couldn't possibly be linked to anything other than MG. That's when I stopped questioning myself for the most part. I still have the occasional day or two when I think something isn't right about the diagnosis but something always brings me back around.

I think all MGers struggle with that to some degree, especially before treatment or shortly after starting treatment. Perhaps like me, once you see how different your life is with medication you will gain some solace from that. One week on mestinon turned me into a whole new person.

As difficult as it is to hang in there and battle through the bouts of depression and anxiety you have to know that you are not alone. Everyone at DS has a different story and being snowflakes we are all different and unique but the general experiences are usually the same. The symptoms may be the same but the was they began or the timing, etc can all be different but we can all relate to the personal doubt and internal anxiety that MG creates... NOT the other way around.

I do hope that you get some answers soon. Even once you get a diagnosis you may struggle with the "unknown" which will always be in the back of your head.

Always remember to be truthful to yourself and realistic about your own expectations of self. Each person knows their body better than any doctor ever could. Continue to tell your story until someone listens and respects what you have to say. Most importantly, don't be afraid to ask for what you want. Often times we have done more research than the average MD so it is possible to surprise a doctor into doing a test that he wouldn't normally do or check something that he/she hadn't thought of. Doctors are human too and they make mistakes and have bad days just like everyone else. Don't be afraid to speak up and if you can't remember things when you go to the office keep journals of everything and an ongoing list of questions to ask when you go in for your next visit.

Okay, that's enough rambling for now! Obviously, I'm not good at short stories either.

Wishing everyone well.
Aloha,
Angie

I identify with what you wrote. For two years prior to my diagnosis, I had breathing issues and Dr's could not find the cause. Although my primary care doc never suggested anxiety, the pulmonologist eventually did. I knew it was medical, but after so many tests turned up nothing, I began to doubt myself. The problem was exacerbated by stress so it was easy to believe it was anxiety. It was also professionally humiliating (I was a trial attorney at the time) and it looked like a panic attack to observers.

I went to a psychologist who observed me struggle to breathe at two seperate sessions. She told me it was definitely not panic attacks and she didn't believe it was anxiety, but she was concerned I would develop panic attacks because of my fear of having breathing issues at work.

Feeling like I could not trust myself to interpret my symptoms took a definite toll. Even when my MG symptoms became worse, I found myself questioning if they were real. Once I was diagnosed, I had to retrain myself to believe my own observations again so that I could manage my disease properly.

The good news is that the self-doubt does get better. It helps that my pulmonologist now admits my breathing issues were MG all along. It does take time to undo the damage, though, and I still have to remind myself to have faith in my observations because my initial impression that I had a medical problem was right all along.

While I don't have MG, I do have another condition that effects Dopamine in the body versus Acetylcholine.

The doctors went around and around...each testing for their own limited specialty, the tests they all each understood. It actually took a week long quest a few years ago on Google to get the ideas necessary to prompt...of all Specialties...a Urologist...to further investigate my hunches.

After a single blood test...the problem was discovered and confirmed with an MRI. Of course, diagnosis was just the first salvo in the battle. But, at least we had a proper direction.

I was treated for Clinical Depression...again, another attempt to solve the problem. There, of course, was the mentality of "blame the victim" and I discovered who a number of people...who I thought were my friends and my "brethren"...really were. It was really eye opening to find people despised and rejected or ignored you because you had problems. I was vocal about my illness because i sought the love of others and their support. But, I was a leper in a leper colony from that point...damaged goods. I was and still am amazed at people's behavior.

Nonetheless, I'd rather have a "mental illness" than a moral illness. It's not the things that are done openly against you that hurt so much, it's the indifference.

Suddenly, in their eyes...I'm a "sinner"...and I've done something wrong or I'm not "living right" or God is "punishing" me or I'm being "tested". So much whooey! "You don't look sick" was a phrase I heard a time or two along the way. Amazing...but, it's human behavior based in shame.

How did I get into this diatribe??

This condition does sound very difficult to diagnose and treat and I feel for each of you.

Rhonda, are you still working as a trial attorney? How do you cope with working at a high stress job and having myasthenia? I too have a uber-high stress job, and I haven't returned to work in more than a month. When the double vision started, I first wore an eye patch for six weeks. Patients and coworkers and strangers were mortified that I was doing what I do with "half my sight". I tried many times to explain that I can see fine with a patch on, and that the brain can accommodate depth perception-wise.

And for Tibetan... as far as people saying "you don't look sick".... I have heard that a million times, and it continues especially when I have to go into work for something. I can laugh at this story now, though not at the time: When I was an inpatient, I had a visually unhealthy roommate. Oxygen-dependent, morbidly obese, intense pain with walking, and many medical conditions. Her family was in constantly, and they actually had the guts to say to me, "Hey, you aren't sick! Can you please help take care of her? You can get things when she needs them and help her to the bathroom and stuff!"

Also, it has been my experience (as an asthmatic) that breathing difficulties cause anxiety and not the other way around. In general. I know there is some hyperventilation anxiety thing, but even that could conform to the rule of breathing difficulties triggering panic. I do not know enough about that issue.

Wow, Thank you all for taking the time to reply to me! I am so relieved to know that I am not alone in this. I completely agree with you all about how hard it is to convince Dr's that what we are experiencing is real when they are so quick to dismiss it as anxiety!

Elinora, you are so right - breathing difficulties DO produce anxiety which, in my opinion is completely logical!! I have stood countless times talking to someone and the pressure in my chest that brings breathing difficulties would start and immediately started to feel panicky thinking I would faint or collapse right there! The thing is that I have this pressure/breathing problem when I am stood (or even sitting sometimes!) alone and I deal with it accordingly by sitting or lying down and resting until it passes. So from that I know that it is not an anxiety issue except for when I am in public as I fear that I will embarrass myself as I have no explanation for my symptoms or reason to excuse myself to take the rest I need and have, for many years, berated myself for those symptoms as it was "all in my head" which only perpetuated my fears further. (They actually identified a breathing restriction 9 years ago that they decided not tell me about because not cause could be found on ECG or X-ray!)

I have learned not to berate myself quite as much over the past year and in a strange way the flare up of my symptoms from a very mild, intermittent level to the problems I am having now has actually helped me to see that this is NOT in my head. I was a very young and scared 23 year old when this started and I was told that it was in my head - I am now a 32 year old Mother of 2 who has many things to be grateful for and happy about - so maybe every cloud does have its silver lining :)

The other strange thing about my story is that I had 2 pregnancies very close together (my daughters are only 14 months apart) and pregnancy actually helped my symptoms and I actually had very little symptoms for 3 years after my second pregnancy (Dr's have said that our bodies produce the equivalent of steroids during pregnancy which may explain this) and my "Anxiety" was actually much better and I would say non-existent during my pregnancies and for a while after!