Hi everyone - I hope your MG is behaving itself and you are all doing ok.

I wanted to ask those of you that are having success with your medication and are able to "control" the majority (or hopefully all) of your symptoms if it helped to alleviate the "psychological" effects of this disease.

To explain myself - as you are by now well aware I am still awaiting diagnosis and don't know if I do have MG despite the Dr's acknowledging there really is nothing else it could be. I know I've posted about the way I have reduced my lifestyle,(ie social life, exercise...basically anything other than work and my little girls is pretty much non existent and even those are a struggle most of the time!) and adapted my life to keep the symptoms as low as possible and to be honest - I have been doing this for 9 years with the fluctuating symptoms so almost accept my reduced activity level quite easily - despite the odd bad few days when the frustration sets in!

My main concern is the psychological impact this has had - after the illness started 9 years ago - I really struggled after being told it was "all in my head" and even believed it myself to the point that I didn't believe/trust whatever my body was telling me. So when I would be out on a day out or driving in my car and would begin to feel weaker, or get breathless/chest pressure or my eyes felt as though they were closing etc etc I was convinced that this was all in my head and began to become very panicky which in turn developed into generalized anxiety. I just couldn't trust myself not to be ill when I was out and became scared of embarrassing myself as "it was all in my head" and there was no cause of these symptoms - anxiety was the only answer. I began to become scared of driving my daughters around as I thought I would faint as that was how I rationalized the "weak" feelings and generally didn't trust myself to take them out for the day alone in case I became unwell and was unable to walk fast enough to catch them if they ran off etc. I would like to point out that I tried medication for anxiety (HUGE mistake, it made me worse - I lasted 4 horrible weeks!) Counselling, Anxiety Workshops, The Linden Method....the list is endless!! I consider myself reasonably intelligent and I completely understand every aspect of anxiety as I have a compulsion to research and do whatever necessary to get better and every "expert" I met commented on how they couldn't understand why my symptoms continued. I am now starting to think it is because I actually WAS feeling unwell and was dismissing my body trying to tell me so!!

I hope I haven't waffled too much there - I'm not good at short stories! I just wondered - if anyone can identify with this and if so (assuming I do get a diagnosis and some medication to help) did the medication and effectively the control of the symptoms help to learn to "trust" your body again and gain your confidence that you are not going to feel ill every time you leave the house for more than an hour!

Thanks again everyone - wishing you all a lovely day

The pyschological effect of these disease can be devastating. I am not stable on my medication. Driving a half day trip to the city put me in the recliner for 21 hours straight. I can not take a day trip, then alone a vacation. Grocery shopping is a major excursion. And I am not coping well. I have lost all confidence in my independence as well and I am a single parent.

I do take Effexor and it does help without any side effects. My only suggestion would be to try on good days to spend more time out of the house. Make sure you have scheduled your mestinon right before your outing. Make sure the day is not too hot and humid and you will not be out in the sun. Take additional medication/snack/water with you in case you are delayed. Make sure you have your cell phone. Try to pair up with another mom with children for additional support. You need to trust your instincts. You have raised children which is the hardest task in the world. You can handle this too.

If need be hire a babysitter or mother helper to come with you to assist until you get your confidence back. This is a process and will take time.

Best of luck
kathie

Hi Kathie

You are so good to me - you always reply and give such good advice. I too have lost my confidence and independence and am also a single parent. Before this illness I flew for Virgin Atlantic travelling all over the world and drove the 3hr commute to London at just 19yrs old, now I don't trust myself to drive into town! I still have no medication but always take food and water...and usually a companion wherever I go but I beat myself up for that, I miss my confidence and independence-I've almost forgotten what it feels like! I am so lucky to have great parents and friends who come with me/take me places with my daughters but I feel guilty that they miss out on things because of me as there are times when I know I avoid car trips and days out alone because I'm scared I won't be well enough to look after them properly if I become unwell! I know I can't live my life worrying about things that may never happen but while they are so young I feel it would be irresponsible to put them in a situation where it is a possibility.

I hope you get your treatment sorted soon, I do keep up with your posts and I'm sorry I can't offer any help as I have no experiences with any of the medications or treatments. Will be keeping everything crossed for you.

Thanks again for your advice
Eve.x

Caffeine dose give MGers a temporary boost. I always keep some dark chocolate in my pocketbook and I always travel with an ice coffee for the trip down and back.

Don't beat yourself about going places with your family and friends. You need them physically and emotionally and I am sure they do not mind. Try some short excursion by yourself and bring the ice coffee and dark chocolate. If you feel a little weak, take some sips and sit down. MG always improves with rest. If you need to take a rest for a half hour, it is no big deal. Life is a process and nobody gets it perfect. The more we try, the more we learn for next time to improve the situation.

I have confided in some of my daughters friend's mom and they have been very considerate. I am the early drive mom, because they know I get tired early. They take my daughter on day trips and vacation and I reciprocate with what I can do. That means the kids are over my house a lot and we host a lot of sleepovers. Toaster waffles make an easy breakfast.

I am use to being a supermom too! Working fulltime, taking care of the house, my daughter, and my mom with Alzehemeirs until she passed away. You need a break and you can make it up when you feel better.

Take care and relax,
kathie

I think that the dark chocolate sounds like an excellent idea!

This disease has had a profound effect on me psychologically. My neurologist put me on prozac and I think it has helped. I am not ready to give up on life like I was.

Don't let docs tell you its all in your head. Its their way of saying they don't know.

I suspect docs are careful to make a diagnosis as it can be devastating--they woulde rather hold off and be absolutely sure when it's a disease like MG with unreliable treatments and no cure. My doc will put MG on diagnosis when sending me for tests but won't say that's what it is as he doesn't have everything ruled out. He's sending me to a pulmunary specialist to be sure my shortness of breath isn't due to a lung issue. And also to a neuro diagnostician for a single fiber EMG.

Hope things look up for you more soon.

Susan

Totally know how you feel!!! Been there - still there sometimes... I have questioned myself, ,my body so much due to the dr's "so, tell me about your stress level"... well hello genius, OF COURSE i'm stressed, of course i'm anxious and of course i'm upset/a little sad.. If I wasn't then the dr's should get concerned at that point.. those emotions are TOTALLY normal when your body is failing you, when the life as you know it is getting taken from you, and you have to change every single aspect of your life, and you dont' know your future... for me, not having a firm diagnosis makes my fears/anxiety even worse, for me.... as I question - is this treatable?? Will I win in the end etc?

The thing the dr's need to realize about these emotions is that this is a RESULT of our symptoms, not the cause.. not saying that being anxious can't make them worse - for me any adrenaline surge (happy, mad, or sad) makes my muscles mush... it's completely frustrating they can't see this.. but again, no one truly knows, and I can't expect anyone to understand since they have never walked in our shoes.. but I sure wish they would try a little harder at least!
Oh and I agree - Caffeine always helps my muscles, but not my heart palpitations!

oh, and before IVIG, I couldnt' watch my own kids... I couldn't bathe them, pick them up, do anything... for months and months.. I couldn't even hold a fork.. When My husband left town for business for one night, I had him call me several times just so if there was no answer someone could come over, as I truly felt I was going to kill over at any moment and my kids would be alone and screaming (they were really young).. it's the worst feeling ever! Ill never forget the moment I could pick up my kids, hold a crayon and smile back at them, as I couldn't physically smile much for a while!

I can so identify with this, I feel like I wrote this post myself. I was also thinking I was going to "faint" because I didn't know what was happening, especially in the car with my two kids! I would shake my head to try and stay "awake" and I told myself it was all in my head and I was just freaking out. But the breathlessness was REAL and not anxiety at all. I think you were not feeling well and your body was telling you this, my body was saying "alert alert! something bad is happening!" and i would just roll down the car window and think I just needed more air. My flare ups fade a bit, I found out this year that I was triggering myself year after year with a certain medication, and my confidence comes back with better health, I hope that yours does too. I had to have a helper for a long time with driving (I was so weak) and with my kids until I felt ok being alone again with them. I hope that you too will gain your confidence back, especially when you get a diagnosis, because then you can make a plan and feel more in charge of your life. Good luck to you!