Annie, thank you

I will put getting tested for the antibody for CD on my list. I've never been tested for it.

I tried scratching my skin and I didn't see what you described, but I know I have had this reaction before, the red swelling with white edges, from minor scratches, like from a fingernail. I remember the doctors doing this in the past when I went in for my allergies, and I had swelling then.

I did have an allergy blood test done in about 2003, that was my most recent. I do think I'd like to know if I am still allergic to everything. I have not had my immunoglobulins tested that I know of. I'll put this on my list of things to do as well. And, also, I am going to try to get a copy of my allergy test results, I only listened to the doctors explain the results to me but didn't see it myself.

To be honest, I really have learned to ignore my allergies, and am only focusing on them now because it seems like minor reactions, such as itchy skin seems to go along with worsening MG symptoms. And also, you mentioned this book, and I was amazed to see my lifetime sufferings described so well here, I decided it was worth pursuing.

I'm going to experiment for a while with a new diet.

I wanted to give an update about my allergy/MG connection. I've been working really hard to avoid or minimize anything that bothers my allergies...and I am feeling so much better, amazingly better.

I don't feel normal, still have a heavy feeling in my muscles from MG, but I don't have any severe MG symptoms at all. I can do all my regular activities without getting weak. It is wonderful! Even the brain fog seems to have lifted, that is the biggest relief of all.

I suspect that watching my allergies more closely combined with quitting my job has worked together.

I'd almost say I am in remission, but not quite. I think I'm headed there. I've had zero bad days since starting my new food habits. I'm not keeping my hopes up, but every day I continue feeling a tiny bit better. I'm not having any more ups and downs.

I have had to reduce my Mestinon to 1/8 of a pill per day. If I take more, I get overdose symptoms. Also, since I do still feel heaviness in my muscles, I probably still need the Mestinon. But at the same time, even that 1/8 of a pill makes my forhead tense, which is a small sign of too much Mestinon.

I need to see my neuro for an update on what he suggests about the Mestinon.

I am a little worried about seeing my neuro...is he going to question my diagnosis now? He was a little hesitant in the beginning even though I have positive antibodies. Do I even dare mention that I am feeling so much better and have almost no symptoms. I do still have symptoms, just no more double vision, brain fog, collapsing on the floor, droopy face, limp arms...I can even sit up straight in a chair.

Now, I haven't tried any extra physical activity, like returning to work or even doing anything beyond regular house chores and an occasional short walk. I suppose doing some activity will be the real test. For now, I'm going to keep resting, keep healing and not do any of those things.

This may just be a short time improvement, but I suspect there is more than coincidence between me feeling good and me taking better care of myself.

And what do I do with my social security disability application? Well, I guess for now I'll just let it go, it is in process, I'll deal with that when they next contact me...it isn't as if I've felt good for more than maybe three weeks, and I am not ready to go out and work yet, I'd probably have all those symptoms return immediately. Having three weeks of increasingly good days made me feel a little guilty, for no reason really, but how I feel now does not match how I answered all those questions...at the time I was having time even brushing my teeth regularly.

Sorry about the long post. I got excited and wanted to share. Makes me think that everyone with MG should quit working, and do whatever they can to stay healthy for their personal situation (I know not everyone has allergies, but I think we all have ways to focus on our health).

I hope these days continue. I am trying to decide how long I should give this before I put myself to a test, such as going for a long walk or doing actual exercise...one of these days I will have to do it...mostly because I really need that disability money or I must return to work. And I don't want to return to work only to find that the MG returns in full force, or get disability with a guilty conscious...this is such a dilemna...

I guess I could really use some advice on how to deal with this dilemna...

Simply because you are having "good days" does not mean that if you push yourself, your MG won't push back. How were you when you were working? Could you even work full time?

Social security is not based on your "good days" but on how many hours per week you could work. They also look at how many days you would miss due to being sick. Don't kid yourself into thinking you're fine simply because you've scaled back on things! Very deceptive.

Try pushing yourself one day and see what happens.

Let the experts figure the social security out. Don't add fuel to the "you're fine" fire. You're not fine. The fact that you have had to dramatically change your life speaks to that.

I'm glad that taking certain foods out has helped. I hope you will get checked for allergies again.

Annie

You are right AnnieB, thanks for the questions...I was working with MG an irregular 12 hours per week approximately, with times when I wouldn't work for weeks at a time...I was barely making it, sometimes too tired at the end of the day to eat, let alone spend time with my kids, finally decided it was not way to live...to take some time off and see how it goes. I feel so much better this way, but it makes me feel guilty, well, the disability application does, for now I am living on money I earned in the past and saved for emergency.

I already have a feeling that I know what will happen when i push myself, and one of these days I will, but I'm pretty sure I'll go downhill so I'm doing my best to enjoy some time not feeling week. If necessary, either to prove my eligibility for disability or because it has been denied and I have to go back to work, I'll be pushing myself some day.

I was able to work 12 hours a week, but that included a lot of unexpected time off, sometimes for over a month.

I know I'm not fine, really, I think I'm feeling guilty about needing help. The truth of the matter is that I've had to really learn a lot to get myself feeling like this, and it takes a lot of control not to go back to previous habits. I've returned to those ways many times and each times the MG gets really bad, and no amount of Mestinon makes me more than just barely functional.

I will go back to get my allergies checked out, but not yet, I've been overdoctored in that subject matter, and I got such little usefulness out of it. I'm still amazed that minimizing sugar intake can do this much, I'm actually starting to be turned off by extra sweet foods, my body is learning to stop craving sugar. I've told a few people, including my mom, and they all think I'm crazy...

I'm not fine, Annie, thanks for the reminder, none of us our fine. MG can really make a wreck of life.

So many people in the past who were "forward thinkers" were thought of as "crazy." Highly respected people like Leonardo Da Vinci. You're in good company. There are so many things in the world that we don't understand. It's great that you have an open mind. And heart.

Social security looks at your work "history" and your inability to do it. Seems like you have a good track record of that.

Guilt? We all pay money into social security so that it's there for when we need it! It's OWED to us if something goes wrong.

You deserve to be healthy but, since you're not, you deserve to get social security disability.

Annie

First, it's great that you have found the way to do better. And don't feel the need to challenge yourself. you will gradually do more if you can, in small steps. pushing yourself too far or too fast, can only disrupt what you have worked so hard for. Do what you think and feel you can do, not what others think you can do.

1. As to your dilemma- This is one of the problems with MG. Once you get it somewhat under control and do better, you and those around you think that you are well, and can go back to living a completely normal life.

most neurologists (at least from my experience) are extremely unhelpful in this, and only confuse you more, instead of clearly saying-that's great, you have learned how to live with your illness better, so just keep on doing what you are doing as it seems to work. For some reason many neurologists have this illusion that patients with MG can lead a completely normal life, instead of understanding that patients with MG can lead a very un-normal good and productive life, once they and those around them find the way to accommodate and adjust to their illness.

I will give you an example that will make it more clear- let's say a patient with uncontrolled diabetes, learns with time what his diet should be, and when he should inject insulin, and he/she does it so well that his blood sugars in the normal range most of the time.

now, after a few months the patient decides that he is now well and "recovered" from his diabetes. So, he goes back to eating cakes with whipped cream, stops taking his insulin etc. what do you think will happen?

2. working or not working depends on a zillion factors. For some people the right thing is to stop working, for others- to work with proper accommodations, there is no right or wrong here.


One MG patient I met at a support group, was somewhat angry at me, she said that if someone like me, who requires intermittent respiratory support, and a wheelchair works as a physician, it "ruins" it for all the MG patients, because if I can work like that, obviously they can. She said she admires me for doing it, but at the same time...

I told her that this is a very superficial way of looking at it (just like the neurologist that thought I only had a mild illness, as I am still working).

First, I don't earn any money, and actually "pay" for working (as my companion's salary, the taxi-cabs etc, are much more then the salary I get for my official 8 weekly hours).
Second, I am extremely fortunate that my co-workers appreciate me for my talents and abilities and therefore are overall ready to accommodate to my significant disabilities.
Third, the same applies to my patients.
Fourth, my work for me is not "work", it is part of my identity, and the person I see myself.
Fifth, I have dedicated most of my life to becoming the kind of physician that I thought I should be. I spent hours and hours or reading, hours and hours of learning from my patients. numerous times of coming back to the hospital at night. many hours in the lab, trying to gain a better understanding on the molecular level and finding better treatment approaches.

So, there is no way I am going to let this illness take away all my personal and professional dreams. This has nothing to do with "working" in the sense that people think about it.

Further more, from the social security and my pension's point of view I have 100% disability. My occupational physician (who is amazing) is ready to let me stop working the moment I had tell him it is too much for me. But, has also encouraged me to get over the relatively small obstacles and inevitable moments of despair I have had along the way.
He (and others) keep on telling me that I may only see a very small number of patients, but those patients receive excellent care.

I also feel guilty sometimes that my colleagues work so hard, running around the hospital, doing consultations etc, while I am having "fun", seeing very few patients a few days each week, and truly enjoying my work, and trust me, there are people who make sure I am well aware of that. But, there are also, fortunately, those that don't.

3. Until I started getting to know MG patients, and trusted what the neurologists said (thinking they should know), I was sure that I am the only MG patient in the world that hasn't learned how to adjust to this illness properly, and at some point I decided to go to meet patients that would teach me what I should do, as obviously, what I am doing it totally wrong, if all the other patients (including mechanics and physical labor workers that my neurologist told me about) except me are leading a completely normal life. And at that meeting, I was quite shocked to learn about the "normal life" they had, and couldn't help asking myself if my neurologist ever actually talked to his patients, and knew what their life really is like, unless he specifically has some "magic" treatment that no one else has (and unfortunately didn't seem to work on me) that cures all his patients.

The bottom line is- learn to trust yourself, your judgment, your decisions of what is important and what is not, what is worth paying some price and what is not, and try to find those physicians who will be your true partners in this. There are no right or wrong answers of how to live with this illness. there are only right and wrong answers for you. And only you can eventually find them.

Alice,

Thank you for the wise and helpful words. The comparison of MG to diabetes is very accurate. I can't thank you enough for saying all this. Great timing as I am feeling pressured to do more by my family, but I don't feel ready to do more, even though I feel better I always have the heaviness in my muscles which means to me that any poor choice on my part wiill have the MG symptoms return in full force.

It takes a lot of focus to keep on track with all the things I've learned to do that help...I did end up eating too much sugar yesterday and felt my body get heavier as my muscles got weak, I ended up taking a long nap...maybe at some point in my life when all I've learned becomes habit and I don't have to think about it so much, I'll return to working, but for now it seems to me that taking care of myself is full time work. I am so glad I did quit working, even if I have to go back, it feels so good to be able to stand up straight...I feel like I gained, or regained, a few inches in height.

I do miss working, this is the second time I've had to give up a career for reasons beyond my control...it really hurts on an emotional level, makes me feel lost, I understand why you keep working...I do look forward to finding a new, third, career that I can do even with the MG, haven't figured out what that will be yet. As for now, I am just trying to figure out how to live with the MG.

Thank you.

sometimes we have no choice but to take time off.

social security disability is meant to give us that time, when we need it, for as long as we need it.

It is meant to give us the time we need to heal, adjust, so that we can go back to be productive members of the society, once we are able and have the tools to do so.

learning how to live with this illness is a never ending journey, but with time you have some better maps to help you find the way.

Good Day Ladies,
I was diagnosed about a month ago now with MG and am on the Mestinon roller coaster ride trying to find the right doses and fighting terrible abdominal pains and gas. I had a fundoplication wrap about 16 years ago so for me burping is almost unheard of so when the gas gets bad its very uncomfortable until it passes..
Anyway I found the allergy talk of interest since I have fought allergies all my life - I am currently into year 10 of taking shots for that. Funny, but for several years I thought the MG symptoms were from allergies until it got much worse... Low B12 was part of the culprit...
I always seem to have worse times during winter months and indoor allergies are always bad. I seem to fight chronic sore throats - yet now when I look back my MG symptooms were almost always better when I had little to no sore throats, so, I am wondering if I can gain some improvements now by trying to single out food groups that may ba contributing thanks to your chit chat?
I appreciate the talk and find it interesting that few men seem to be active in contributing, however MG seems to be more prevalent in women and that could be a factor... I am still working but not sure how long that may last - day by day for now....

Chit chat, eh? Welcome to the discussion, Smokey.

Did they ever figure out the CAUSE of your vitamin B12 deficiency? Probably not. Some reasons are H Pylori infection, pernicious anemia (another autoimmune disease) and achlorhydria (which those with pernicious anemia have too). Without stomach acid, people tend to have more infections, because we need that to digest food, reduce GI tract inflammation and a host of other reasons. Without it, food putrefies in the gut. Lovely, right?

Anything that adversely effects the immune system will effect your MG, in my opinion.

I hope you'll revisit allergies with your allergist. Or possibly get a 2nd opinion. Why are you having shots for ten years, is what I'm wondering. Have you ever tried anything like Astelin? It's an antihistamine nasal spray.

I'm sorry you're having trouble working.

DF, That is a good analogy by Alice. You never know with MG what you can't do until you try to do something. It's so deceptive when you reduce your life to the simplest of things like doing dishes.

Annie