I am not sure I have MG. I have been to a rheumatologist who thought my symptoms were MG. Now I have to wait 2 months for an appointment with a neurologist. I am a single parent without anyone to talk with about it. I do not want to scare my 14 year old daughter with this. People are starting to notices my symptoms at work.

I am frighten with what my future holds and don't know how I am going to wait 2 months for a diagnosis. How do you get through the waiting part especially with all the ups and downs of this illness and the uncertainty how I will even feel when I wake up tomorrow?

The worst of the symptoms occurred after surgery in March

I think that we are all put in a holding pattern by the doctors. Most of them have never seen MG and they have no idea what to do with it. I would try to get the neurologist appointment moved forward.

Meanwhile, just don't push yourself to do excess physical stuff. Rest is your friend. Rest is the best medicine out there for MG. (Not to say the drugs don't help; they do.)

I am still faced with guilt trips when I don't get the house clean, when I don't participate in various activities, etc. But I just can't do everything that I once did. So I don't.

How do you wait? You just do. If you get severe, go to the emergency room, but it is probably a waste of time unless you can't breathe or something. On a good note, at least for me, this is not something that gets you a little off today and slams you down tomorrow. Things move along slowly. If you have MG, you will probably not be any worse tomorrow than you are today. Don't let fear or stress make you worse.

This group has really helped me. Hang around.

If something alarms you, go to the ER. Trouble breathing or swallowing is a medical emergency. You don't want to fool around with these symptoms, because MG can be unpredictable, and you can get into a dangerous situation very fast.

Check the hospitals in your area: some have neurologists in residence, and some don't. If you need to see a neurologist before your appointment comes, you can go to an ER at a hospital with a neurologist.

Abby

Don't fret, as you have both support, and help here; though we are not doctors. On the other hand, most of us probably have gone through what you are experiencing, as well as the frustrations and apprehension.

What are your symptoms, plus what were they after "surgery"?

Thanks for the support. I have been feeling progressively tired and weak over the last 2 years. I had a hysterectomy in March and have bee feeling terribly weak since. My right eye droops and is slow to respond, my legs are weak and I keep tripping and dropping things and the least physical activity exhausts me. I have muscle pain and weakness and terrible ringing in my ears. The heat makes me feel so much worse, I have barely have been out of the house except to go to work.

Thanks for your words of support. That was a great suggestion about checking out the ERs ahead of time. I live quite rural and a hospital is at least a half hour in any direction.

This is my first time posting to a message board, so please excuse me if I do not get the ettiquette right.

I started with symptoms about 2 years ago with muscle pain and fatigue. I had a hysterectomy in March with some organ repairs with the mesh. That is when my symptoms got a whole lot worse. My right eye droops and is slow to respond. My muscle are weak and I trip, stumble, bang into furniture and drop things a lot. The littlest physical activity leaves me exhausted. I have ringing in my ears and often start choking when I eat or drink. I have no respiratory symptoms which I am thankful for since I have had severe asthma all my life.

Do the neurologist put you on meds right away or do they run a whole bunch of tests first?

Thanks everyone, kathie

Dear Kathie,

I did not have a definite diagnosis for more than 3 years. (even though I was hospitalized in the ICU with a "myasthenic crisis" during that period).

Even now (when I have "objective" evidence) for my illness, some neurologists would probably not accept this diagnosis as it is based on tests which are not done routinely.

So, you can see me as an "expert" in living with this type of uncertainty.

As I have said in another post-despite severe disabling symptoms and numerous humiliating experiences, I did not let this illness disable me nor be humiliated by those who treated me with such disrespect.

It was not easy, but except for a relatively short period (of 10 months), I kept on with my work, and continued to trust myself and my coping abilities to overcome this. I had (inevitable) moments of despair, but I never let those last for long or take over my life.

I made it clear to everyone around me that I have stayed the same person, have the same ambitions and goals and will find the way to accomplish at least some of them, even if it requires doing it in a very different way.

I would always tell my patients that we do not choose the circumstances of our lives, but we do choose the way we deal with them. And during hard times, I would remind myself of this advice.

Most MG patients do not have to live with this uncertainty for so many years. Most will have a much easier to diagnose illness and will respond to currently available treatment within a relatively short period.

I hope you belong to that more common group of patients.

Alice, I hope you are right and they are able to give me a diagnosis soon and put me on treatment. You mentioned that you worked nearly the entire time during the course of your illness. People at work are starting to notice my droopy eye and me tripping all the time. I know someone will say something to me soon about it and I am not sure what to say. I am afraid of telling the truth about the doctors suspicions that I will be treated differently and it will hurt my position. Any advise on how to handle co-worker and my boss's questions?
Thanks, kathie

Hi Kathie- welcome, but sorry you have to be here!!!
I do not have a diagnosis of MG, but have been diagnosed with CIDP.. however my symptoms more resemble MG.. (droopy eyes, difficulty swallowing, breathing, walking you name it).. I started getting sick after I had an IUD placed and perforated.. I never seemed to recover and just got worse.. reading about your surgery, I think that trauma to the body (surgery, illness, stress) can trigger these autoimmune issues to show their ugly faces!
It has been about 16-17 months since I started getting sick.. i did have to see many many dr's - pcp, neuros, rheumatologists etc etc .. some thought I was just "a tired working Mom" - UUGGH.. others thought something was wrong but just said "huh, well interesting" - ha not something a patient ever really wants to hear!!
I finally ended up getting worse and worse and got admitted, I could barely move or breath, couldn't make a smile face or anything.. that's when they started IVIG.. at that time I had no definitive diagnosis.. '
It's so important to find a dr that will listen to you.. some dr's thought since I wasn't dragging a leg I was fine.. but i knew something was awfully wrong and couldnt' even hold a fork or a crayon to color with my kids... - thats not fine!!!

I worked throughout it all too... when I got admitted I had to take about 6 weeks off.. I worked about 3 months where I thought I was gonna kill over.. the week before I got admitted I coudln't stand up straight, swing my arms when I walked or hold them up to a computer.. There was no keeping secrets at that point.. Most people are going to just be concerned more than judgmental...After the 2nd round of IVIG I was back to new, it was amazing, and I didn't stop smiling (something I couldn't do for months) for at least 2 weeks!!

The limbo diagnostic period is defintely the hardest part I think... I was terrified I had something terminal.. I would still be over the moon for one test to come back positive so there would be no more doubt in my mind.. however the meds are working, and that's what matters the most!

Good luck to you!!!

First, I am very fortunate to work with an amazing team of people.

Second, people noticed (in fact the head of my department realized something was abnormal before I was ready to admit to myself that I am not just a bit overworked and tired).

Third, explaining this illness to someone who has not experienced it, is nearly impossible. I got used to people thinking that I am depressed (after seeing myself in the mirror I realized why they thought so), anxious (it's very hard not to sound very excited about what you are talking when you can hardly breath while you talk) or even one of my patients asked me why I ran 8 flight of stairs instead of taking the elevator.

Also, people like to have something to talk about, and me and my illness was apparently a very "juicy" topic. Mostly that some of my treating neurologists thought it was just fine to discuss their thoughts and opinions with my colleagues. (They seemed to think that patient confidentiality does not apply when the patient is a physician).

I had times when I would just say that I think I am very sane, considering the fact that I am such a "crazy" person.

I had to learn to deal with remarks such as-some people work and some people have time to relax or do research; I had to accept that some of my accomplishments will not be understood or appreciated. (although, some surprisingly were much more than I have realized).

I had to get used to people criticizing the way I deal with my illness. I had to get used to everyone giving me their advise. (some was useful, but most was-you should have more hobbies, you should exercise more, you need to be more determined etc etc. )

But, I learned to find the core of what was truly important, concentrate on that and mostly ignore the rest. With time, those around me also learned to accept me the way I am and respect the way I have found to live with my illness.