Food Allergies & MG
 

A big thank you to AnnieB for recommending this book on food allergies. :D Here is the link if anyone is interested.

http://www.amazon.com/Food-Allergies.../dp/047138268X

I am posting this here again because I am finding that my MG gets less severe when I reduce my allergies. I think for me, allergies and MG go hand in hand. Maybe other people suffer from this combination.

I have been experimenting with food a lot since I got MG, because this can make a big difference in how severe my MG symptoms are.

My food allergy symptoms are minor and I've never considered them anything more than an irritation, until now. This book describes the exact trouble I've had my whole life. I don't have typical food allergies, but rather an allergic reaction to any food if I eat it in large quantities. I've had skin and blood allergy tests and I am allergic to most foods, but I have to eat...

This book points out that if a person has this kind of food allergy, they often need to minimize sugar, MSG, acidic fruits, and artificial sweeteners.

I have been testing my reaction to sugar, acidic fruit, and foods that naturally contain MSG (I refuse to eat artificial sweeteners ), and I am noticing that all of these give me both allergic reactions and increase my MG symptoms. Now I am working on reducing sugar and fruits in my diet, luckily it seems I can eat small amounts of these things.

For example, I love ice cream...I can eat about 2 small scoops and be ok, but a third scoop gives me a slightly scratchy throat and itchy skin, and then within an hour or so I get more MG weakness (the specifics vary). If I go for 4 scoops, I get red irritated bumps in my throat and I have difficulty speaking, mostly due to the MG. I don't know why I didn't notice this before. I guess because the irritation goes away, and plus it happens all the time, for most of my life, I had gotten used to it.

Perfect timing to read this book, since my food experiments have come to a similar conclusion as this book, so the book was extremely helpful, like a confirmation of sorts.

Does anyone else suffer from allergies or notice a connection with MG?

I am hoping that I can further change my diet and maybe have less MG weakness.

Thank you again, AnnieB!

I'm so glad you liked the book. It's hard to explain to someone. I took out additives, MSG, etc. back in 1997 and it really helped. I did away with dairy last year and was shocked at how that helped. My dairy reaction got so bad that I was having an immediate inflammatory response in my mucous membranes. Not fun.

This guy is super smart and knows how additives impact our bodies little cell "furnaces," a.k.a., the mitochondria. They put a kink in the biochemical pathways. There have been studies that show people with MG can also have mito issues as well and may benefit from CoQ10.

Since getting celiac, it's hard to do any kind of rotation diet, which he recommends too. Except for the occasional dark chocolate, I stick to the no sugar diet.

I hope making changes continues to help your overall health.

:hug:
Annie

YES, I have no doubt that there is a connection between MG and allergies. I've been allergic since I was a toddler -- my mom had to remove all of my stuffed animal, curtains, and bedspread from my room............had to wash the blanket and sheets in hot water once a week (no air conditioning back then). I am allergic to EVERYTHING -- animals, grass, trees, flowers, foods, chemicals, perfumes.....the list just goes on and on. It used to take WEEKS for me to get tested -- and then re-tested for my shots. I took shots for YEARS -- and they DID help. But, only to a point. And, the shots don't do much good for food allergies (at least they didn't for me). BUT, antihistamines help TREMENDOUSLY!! I've gone into anaphylactic shock several times due to wasp stings (I carry epinephrine in my purse) -- but, once Claritin became available, I found that it "knocked" my reaction back enough that a sting wasn't life-threatening.

I take Claritin or Zyrtec EVERYDAY of my life -- without it, I wouldn't be able to eat (and my nose would run, eyes would water). Before that, I relied on Alka-seltza Gold (sp?) -- something my allergist told me about. It changes the ph of your system and stops an allergic food reaction (or so they theorize). Anyway, it always worked for me. But, the antihistamines are BETTER.

I prefer the Claritin -- Zyrtec dulls my mind. But, in the spring and fall, Claritin ALONE isn't quite enough -- I have to supplement it with either a half or whole Chlor-tab.

My MG is MUCH worse when my allergies "break" through. When I got stung by the yellow-jackets, I thought I was going to go into an MG crisis. When my asthma is in full swing (my asthma is allergy related), my MG kicks up its heels, too.

I have done the rotation diet AND the caveman diet. At one time, there were a few foods that I was NOT allergic to -- I ate ONLY them for a couple of weeks -- and developed allergies TO them -- LOL!! Oh, well!!

Now, I just eat in moderation. I gasped when you said FOUR SCOOPS of ice cream!!! I do NOT eat like a bird -- but, if I ate THAT much of anything -- I would be as sick as a dog!! I try to eat a variety -- fortunately, wheat doesn't bother me any more than anything else -- no celiac, here. The only thing that I TOTALLY avoid is Chocolate (yes, THANK you for your sympathy :winky:) -- it gives me migraines -- I haven't had even a bite of chocolate in more than 15 years. *sigh*

My allergist was praising CoQ10 25 years ago -- and my mom's PCP is INSISTING that she take it NOW! There has gotta be SOMETHING there.

I'm taking D3 right now -- have been since late September, when I could no longer get enough sun to make my own vitamin D. I just feel better this winter -- I still have MG -- and my speech is PATHETIC :eek: -- but, I'm just not miserable like I was last winter.

AnnieB,

I have thought about trying the CoQ10...I've already talked to my neuro about a whole list of supplements including this one and, while he didn't think any of them would help, he didn't see a problem with me taking them.

I think this rotation diet is a great idea. I seem to be allergic to most foods, especially if I eat them every day. Luckily I don't have any severe food allergies and can eat wheat and milk, although I try to eat them in moderation because I tested positive as being allergic to them a long time ago. The only thing I have never had a reaction to is green vegetables.

I need to find more things that taste good for breakfast. Recently I have been skipping breakfast because everything I usually eat for breakfast bothers my throat. I think it is the sugar/fruit. My favorite breakfast is oatmeal with bananas. In the last few months bananas have started bothering me, too.

I may have a mitochondria problem, you are right. I looked up some of the possible symptoms, and I don't have any of the symptoms I read, but I do think there is something that doesn't quite work right in my body, more than MG alone. I read that Mestinon often helps people with mitochondria disorders...

I do enjoy a bit of dark chocolate now and then, delicious...:hug:

Jana,

I can relate to your experiences. I took Claritin for many years, it is the best allergy medicine for me, too. I have severe perfume allergies and for a while I worked with someone who refused to stop wearing perfume to work even after I asked nicely and explained what it does to me. I spent a long time with a constant runny nose and eventually I ended up really sick...I quit working with her but I developed new allergies and everything I breathed in bothered me for about 6 years, I had to regularly take Claritin. I don't think Claritin helps my food allergies either, at least I haven't noticed anything helpful, so I have quit taking it.

It sounds like we have similar food allergies.

I love ice cream and usually only eat small amounts...I tried eating varying amounts out of curiosity (I tried similar things with other sweet foods), when I was wondering if sugar bothered me. I won't do that again, but that was the thing that confirmed for me that food was a big issue for my allergies and my MG. So now I am eating everything in small quantities and trying not to eat so much sugar since it seems to be the biggest food that effects my MG.

You can't eat chocolate, and I can't eat cinnamon. I love the taste of cinnamon... I guess I do have one severe food allergy and it is cinnamon, it makes my whole face and chest swell up with welts, and I itch like crazy, I have no idea what it does to my MG since I haven't ate cinnamon for a long time. I can't even handle the scent of cinnamon, it makes my MG get really bad, I get itchy but that is nothing compared to cinnamon's effects on my MG, scary.

Sunlight is a big help for my allergies, I think the vitamin D is very helpful for allergies and MG. I try to go outside for at least 15 minutes on most days and notice the effects. Vitamin C and E are also helpful for my allergies, and seem to make a small difference for MG.

I think I'll try some CoQ10, this topic has convinced me.

:D

I am on my second day of not eating sugar and I feel great! It is noon and I don't feel weak yet, haven't taken Mestinon today yet, although I will shortly. I do still have that heavy feeling in my muscles that never goes away with MG, but I am amazed at how good I feel.

Is it possible that not eating sugar and other foods that give me a sore throat can make this much of a difference and so quickly? I must admit that I am craving sugar, maybe I also have some kind of a yeast problem, even though I have no symptoms...I think craving sugar is a symptom of a yeast infection, maybe that is why I am getting a scratchy throat when I eat sweet things...I wonder, am I feeding yeast in my throat?

I have been taking two doses of Mestinon daily (reduced from previous 4 to 5), yesterday the second dose bothered me, made me nervous and my facial muscles tightened and I ended up with face cramps because I couldn't relax my face. I was jittery and kept dropping things because I was moving too fast last night, and I was having difficulty speaking because I was talking too fast, I don't like this side effect of Mestinon.

When I mention this nervousness effect of Mestinon on me, a few people here have mentioned that I may have Graves (hyperthyroid). I want to say here that I have looked up the symptoms multiple times and I am pretty sure I don't have hyperthyroid. The symptoms, other than the nervousness (and a few overlapping MG symptoms such as weakness and double vision), don't fit me at all. If anything, I am hypothyroid because I have a tendency to be cold all the time, but hypothyroid symptoms don't fit me either. I think my nervousness is from the Mestinon, and the nervousness gets worse as my MG symptoms get less, and it is always after I take Mestinon.

I am confused as how to alter my Mestinon dosage so I don't get these symtoms when I am feeling better. I feel like I should be enjoying good days instead of dealing with side effects from Mestinon. I don't get side effects anymore from Mestinon when my MG is bad, only when I am feeling good.

I think I'll lower my Mestinon dose again if I still feel good later today.

If I continue feeling like this, I should be able to work again. Of course, I need to be careful, because last year I started feeling better, and I went back to work and my MG got worse and it has only recently recovered.
No point in finding a job if I can't keep working.

Does anyone else have trouble with Mestinon when your MG symptoms are minimal? How do you adjust your dosage?

Maybe I am feeling better recently due to this work on reducing my allergies and because I finally quit working.

Sorry for the rambling, but I got excited, and I LOVE to hear when others are doing well, it has always given me hope.

I think I'll play some music and dance a little, I haven't been able to do that for a while, I feel bouncy, like a weight has lifted...I wonder how long this will last.

Susan,

Have you ever considered that you could have a systemic yeast infection that is driving your body crazy? I have a friend who was plagued for years with some of the same things you are describing - - and she finally found relief with a yeast remedy .... packets of stuff that she mixed with water. There was a treatment phase followed by a maintenance phase.

Huge difference it made in her life!! I'll post the website as soon as I get. Might be worth a look.

Here's one of the sites...www.candidasymptoms.net/

There is a lot of info and infomercials on systemic candida to be found when doing an internet search. I was not inclined to be a 'believer' until my friend had such great results. See what you think.

Thanks,

I just read the introduction (on amazon) and loved it-

This allergist says-I asked myself-what should I trust-what is written in my books or what my patients tell me, and I chose to trust what my patients tell me.

Sue,

Thank you for the reminder!:hug:

I have had systematic yeast infections two times in my life. Once as a child from being overmedicated, and at that time either the drugs or the yeast infection almost killed me (most likely the drugs). The second time I had a yeast infection was when my allergies were really bad...hmmm...there is something similar now, I may have another yeast infection. I don't get the typical yeast infections most women get, my symptoms seem to show up as allergies.

I was thinking about the candida connection yesterday, for some reason I hadn't thought of it until when I was typing my previous post. I think I'll go back to taking the pro-biotics, and avoiding sugar and other foods that feed the candida. This worked last time. I've slowly let my diet go back to eating more sugary foods...

I remember now the book my previous doctor recommended, it is "The Yeast Connection" by William Crook. I found this book very helpful in learning what kind of diet changes to make. Here is a link to his book:

http://www.amazon.com/Yeast-Connecti...tt_at_ep_dpi_1

I wonder if the packets you are referring to is Threelac. I have not tried this brand but have taken other probiotics in the past and found them very helpful.

I do think there is a connection, at least for me, with allergies, candida and MG...

Alice, I enjoyed the way this allergist was open minded. I learned a lot from his book. I must admit that I found the repetition of information annoying in the second half of the book, I felt as if he was repeating himself. Still, I found this book full of great insights, as if he were putting the puzzle pieces together from a difficult puzzle that I have struggled with my whole life.

Susan,

Yep, she said it was Threelac! She's been on the maintenance regimen now for 3 years.

I asked my husband to get me this book, who knows, it may another piece of the puzzle, worth looking at.

It makes perfect sense that the food we eat, in the modern industrialized world will pose problems, at least for some people. We were not "programmed" to eat, digest or metabolize the kind of stuff that our food contains. I am sure that some of it may even be recognized by our immune system as unwanted invaders. how can our immune system differentiate between a pathogenic bug or a food coloring molecule?

I also think that much of this stuff did not exist when the medical text-books were written, so it is not surprising that there are "unusual", "unexplained" diseases that would be caused by what we eat and also possibly by what we are exposed to in other ways (such as all those "stay on your clothes" detergents etc.). our nasal mucosa and respiratory system also have cells that recognize invading organisms or debris, and could easily recognize those as such.

I thought of this long ago, but didn't see any solution, because it seemed impossible to avoid it all, unless you move to a desert island. so, I am very interested to see what solutions he is suggesting.

It is also very reasonable that autoimmune disease will be worse by an allergic reaction. I have noticed this in my patients with Immune Thrombocytopenia and seasonal allergies.

I also saw an interesting article suggesting harnessing this response to create tolerance to the auto-antibody, as a way of treating the autoimmune disease.

Alice,

Thank you for sharing your thoughts, I found them insightful, especially you noticing the effect of seasonal allergies on your patient, this book also mentions how seasonal allergies can make food allergies worse.

I had previously come to the conclusion that avoiding the foods I am allergic to was impossible and it truly is, we have to eat.

The book did help in identifying the foods that are the worse causes of symptoms, at least for people with this kind of allergy.

I think I can learn new habits that avoid most of my exposure to the short list found in this book, and learn to rotate the rest of the foods.

It does make sense that our body wasn't meant to handle all the processed foods, added chemicals and refined sugars that are commonly found in our diet. Our bodies may be trying to protect us from the onslaught of what it sees as invaders, and then it gets overwhelmed and starts attacking other things, such as our bodies and food.

The thing I learned reading this book was to try not to overload my immune system with MSG, sugar and acidic foods, but that it is okay to eat these things in small quantities.

I am really interested in the function of the suppresser lymphocytes. I wonder if there is something a person can do to strengthen this part of the immune system, the part that stops allergic reactions and stops the immune system from attacking itself. I think this is related to your thought of creating tolerance to the auto-antibody. I am going to quote a paragraph from this book, because it gave me such hope. I think the same idea can possibly be applied to MG and other auto-immune disorders.

From "Food Allergies" by William E. Walsh, M.D.:

"To help relieve classic food allergy, our immune systems need a break from this monotonous diet, a day off once in a while. That's why varying your diet can work so well. Not eating wheat, corn, milk, or citrus fruits for a day gives the police responsible for these foods a well-deserved respite-a chance to refresh themselves. Then, when you reurn to eating these foods again, your refreshed immune police can stop your immune system from attacking the foods. Alternatively, they gain this rest if we eat only a small amont of the food each day, an amount they can easily control.
Is this police force a figment of my imagination? No; it exists. The police I described are cells of the immune system, cells called lymphocytes. The lymphocytes that stop allergic reaticion are called suppresser lymphocytes, and, as their name indicates, they suppress or stop allerigic reactions to foods. When they weaken, when they become exhaustedd, we suffer the immedieate or delayed syptoms of food protien allergy."

This book leaves me wanting to know more.

I remember now the book my previous doctor recommended, it is "The Yeast Connection" by William Crook. I found this book very helpful in learning what kind of diet changes to make.

Wellllllllllll, since YOU brought it up, Desertflower!! I was a PATIENT of Dr. Crook!! He was my allergist!! I was his patient when he started writing the books (there are several). He used to talk to us, his patients, ALL the time -- getting feedback -- asking questions -- he was constantly trying to figure out the mystery of allergies. Candida seemed to be a LARGE piece of the puzzle. I have taken Nystatin on and off for YEARS per his instructions. Since being diagnosed with MG, I have found that taking one Nystatin tablet a day seems to help tremendously. (Nystatin kills candida in the gut -- systemic candida.)

If I EVER have to take an antibiotic, I take one Nystatin for each antibiotic pill/capsule -- trying to keep my system "in balance". Kill bacteria -- kill candida -- neither takes OVER.

He passed away several years ago -- a stroke. I cannot tell you how much he is missed -- as a person AND as a doctor.

I must say, though, that in the EARLY days, Dr. Crook was met with GREAT skepticism by other doctors in the "rigid" medical community -- even though he was literally changing/saving the lives of his patients. He was a TRUE pioneer -- bold, fearless. I cannot tell you what he did for me -- and for others.

The way that he tested for allergies AND gave shots 20/30 years ago is JUST now being taught and accepted by medical schools. The man was LIGHT years ahead of his time.

I also suggest reading books by Dr. Theron Randolph.

Jana,

Exciting! How lucky you were to know this man. I've never been to an allergist that was helpful. I went through testing three times, two times by an allergist. The allergists basically threw up their hands and told me that I was allergic to so many things that I was going to just have to eat what bothered me the least, that I was allergic to too many things for them to be helpful. I was tested once by my favorite doctor for allergies after I tested positive for candida in my blood. She isn't an allergist, but she was learning about natural medicine to combine with her medical practice. She was the one who recommended this book by Crooke and thought my allergies might be helped by the suggestions in this book.

I am happy to know that controlling candida helps your MG symptoms. From all I'm learning, it seems that if someone gets MG or another autoimmune system disorder, it is worth looking into the possibility of having systematic candida or another infection that may have caused the immune system to overwork itself. I'm surprised that doctors don't have a list of infections to test for after they confirm a MG diagnosis, I suspect it would be helpful.

Thank you for your the response, the excitement I sense in your typing has made me smile. :D

I am afraid the immune system and its regulation is much more complicated then that. This approach fits what we knew about the immune system more then 20 years ago. We now know it is the edge of the iceberg.
Many disease (probably more then we are aware of) involve some form of immune dysregulation.

At the same time, medicine is an empirical science (eg-based on observations, even if we do not always have a proper explanation for what we see). So, he may have reached the right conclusions, even if his explanations were a bit over-simplified.

I will let you know what I think after I read this book.

Sweetie, if you tested positive for allergies to both wheat and milk, it is absolutely imperative that you stop eating them NOW. Fortunately, there are lots of alternatives to both of those substances. If you have a doctor's note that you cannot eat them, you can deduct the difference in cost for "special" foods on your income taxes (if you itemize deductions).

Do an Internet search for "Celiac Disease", and see all of the conditions that are associated with an undiagnosed case of that. Anyone who is allergic to wheat who continues to eat it will more than likely be susceptible to those same conditions if they don't eliminate it from their diet.

You may want to get retested for CD; however, if you are taking steroids you may get a false negative result.

The funny thing about a wheat allergy is that many people don't have a "typical" allergic reaction. I didn't realize that I was allergic to wheat until my mom gave me a copy of an OLD allergy test I had done over 40 years ago (and over a year after I started a gluten-free diet for completely different reasons)! It can wreak havoc on your immune system....

You are right in pointing this out, and I have already taken your advice when you first brought this up, knowing I tested allergic to wheat, I don't remember when that was, months ago. Thank you for doing so.:hug:

I did not see any improvement from removing gluten from my diet, although there may be some not so obvious symptoms. I don't have any of the symptoms listed for Celiac Disease, I do get itchy skin that turns into a rash if I scratch, that could be related. I am rarely eating gluten and wheat but I decided not to eliminate them completely, it is too restricting, mostly because of all the other foods that I am allergic too that have more noticable symptoms, but I eat those, too. I am allergic to most foods...In the past I ignored the symptoms unless they turned into a runny nose, but I am not going to do that any more.

I do think that MSG and sugars bother me the most, and also some of the sweetest fruits such as bananas, mangos and pineapples. I am going to give this new idea a try, because from what I am seeing, avoiding these things really improves my MG, there is no missing such an immediate effect.

I think the only food I have been eating with gluten is oatmeal, but I am not going to eat it for a while because I add sweet things to it such as sugar or banana, both of which aggrivate my MG. In fact, I only like wheat and other grains when they are sweetened, so I guess I am going 99% gluten free for now. I think I will work towards new food habits that rarely include gluten.

The good news is that I don't like bread.

I am not able to avoid all the foods I tested allergic to (I am allergic to every single food that was tested), I'd starve...that is why I think this rotation diet may help.

It is good to know that you can deduct costs from your taxes...this is great to know but it made me laugh...I don't think I'll have much income for last year, probably none or most likely negative after my standard deduction, however this is good to know. I can't live on my saving account permanantly. I am hoping these good days last so I can go back to work...it would be nice to have a paycheck.
....

How are you Teresa? I haven't seen any posts from you for a while.

http://emedicine.medscape.com/article/1050294-overview

Susan, Some people have dermographism, like me, and tend to have an exaggerated histamine response. If you scratch your skin (like on your arm) and you see a red raised area, usually with a white area around it, chances are you have this. Mine has decreased somewhat since taking certain things out of my diet. When doctors have checked for this in the past, they used the end of a pen! Not a very sanitary way to do it.

When I got celiac disease in 2004, I also had hives. Some people with CD get an immune reaction in the gut (mast cells) that cause hives. They don't really know why some patients, like lupus patients, are more prone to having hives or this type of immune reaction.

The only way to tell for sure if you have celiac disease is by getting the antibodies tested for. And IgA, because a deficiency of it can make it look like you don't have CD when you do. And you should know that some patients with CD have absolutely no symptoms. The problem with the antibody tests is that some gastro idiots have decided that the reticulin antibody test doesn't need to be run anymore, due to the cost (not very much), wanting one magic bullet test, the fact that people with this antibody may not have a positive small intestine biopsy right away and that not as many people test positive to it. They have NOT done away with this in Europe.

Like Alice said, the immune system is so incredibly complex. I'm quite sure Dr. Walsh was simplifying for the sake of book sales. ;) Not many people want to read complicated medical jargon, especially not about the immune system. I've spoken to him, having been a patient of his, and I can tell you definitively that his knowledge far exceeds what has been written!

Ditto on Jana's comments about yeast/candida/fungas, etc.

Allergies do change over the years. It might be worth it to be tested again. They can do RAST testing (blood tests) instead of the skin tests.

The other thing that needs to be thought of when considering immune reactions is the gut. Keeping the GI tract healthy and happy is essential. All those years I didn't know I was without stomach acid had a huge impact on my immune system. I was constantly getting sick. A year after taking Betaine HCL, a mild acid usually made from sugar beets, things settled down and I don't get sick anymore. Knock on wood.

I wish you could find a good allergist or immunologist. There might be an immunological reason why you are having such a hard time. Have you had your immunoglobulins (i.e., IgA) tested for?

I personally saw the 2nd half of Walsh's book as an integration of the 1st half's knowledge. Some people are not as "astute" as you and need those details to put it all together. ;)

Annie

Annie, thank you:hug:

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.

Update
 

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.:hug:

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. :rolleyes:

Annie

Hi AnneB3,
Well, my reg MD of 8 years told me I should see a shrink as the face pain, balance issues, etc etc must be in my head! So, I got a new Dr and within 30 days he said I had Pernicious Anemia and started B12 shots - immediate improvements! I was having hard time opening left eye, terrible pain on one side of my face etc.
So, I was thinking long term B12 deficiencies had caused all the trouble- as I was feeling a lot better most of last summer. Then winter came and some trouble started to flare again, balance, weakness - by end of day I was so tired I just wanted to lay down. Mind you I have always been an avid outdoors person, worked out etc so this was not normal aging to me...
Went to see a neuro Dr about month ago as neck was killing me, weakness terrible and breathing challenges. He ran many tests and suspected MG - blood tests came back positive so thats where we are at now...
I have had swallowing difficulties all my life and would get very tired chewing food - heck I thought I was normal - thats how everybody felt - right! :)
The allergy shots have been drug out thinking the face pain was sinus related - that apparently was long term B12 / MG symptoms so like many have said this disease has many faces...
Gotta run - thanks for the kind words!
Smokey

Smokey,

winter months have always been bad for my allergies, too. I agree with Annie, anything that helps reduce the load on your immune system will help with MG symptoms. I am finding wonderful results with avoiding things I am allergic to the most. My chronic sore throat, which I previously considered a nuisance is gone and my MG is much improved.

I've never had allergy shots, my doctor didn't think they would be helpful and I never questioned that decision. I did take Clariton for a long time, but don't need it anymore...seems that my lifestyle changes I've been making to live with MG continue to make my allergies less, which in turn helps the MG.

I surely don't understand doctors saying our symptoms are all in our heads...I know I get worse MG symptoms when I get stressed, but that doesn't mean it is all in my head.

I hope that you start seeing improvements now that you have a diagnosis and are working out a best Mestinon dose. I find it a great challenge to get the right dose of Mestinon


AnnieB, you are right about things being deceptive, because I have reduced my activities to the bare minimum, I don't even clean my house other than the bare minimum things...it is such a relief...I am not ready, nor will I probably ever be ready, to return to regular activities. It feels so good to be able to enjoy living for a little while...MG had made life so miserable...thank you for suggesting that book. :hug:

Desert Flower,
Can you single out any particular foods that you felt were more problematic than others?
I know I have drank a ton of diet pepsi over the years and try to cut back as I think the acid and sweeteners may have a lot of irritating abilities...
Never smoked, drink very little so soda has been my one crutch...:D

Maybe you ought to look up http://www.relieve-migraine-headache..._tyramine.html. (That is not the best source about tyramine; leaves out some things like aged cheeses, fancy European chocolates, and things with miso.) I have bypoglycemia which can be a pretty violent reaction to high sugar/low protein, plus fanicier culinary delights. I also stick to a low fiber diet, because fiber tends to sit and create some sort of mouldy reaction in my system. I would as soon slit my throat, I think, as bring on one of those attacks. Any of you who recall the old 'Chinese Dinner syndrome' would get the essence of it. The main interaction with mg (or any gastric problem) is when I cannot eat regularly and protein levels hit bottom. I just get sicker and sicker. The infamous Atkins diet was helpful finding the right foods.

hypoglycenmia. I am reading screen with a light on in here for the first time in 2 weeks!

I can tell you the worst foods for me, but we are all different, it probably won't be the same for most people.

Soda is one of the worst things I can drink...it gives me pain in my kidneys and leads to kidney infection if I keep drinking it, been to the doctor way too many times due to soda, I won't even touch it now.

Cinnamon and shrimp are the next two worst food items...cinnamon gives me a major itchy rash with welts and also gives me runny nose and scratchy throat. I have gotten bronchitis from working with someone who chewed cinnamon gum and refused to stop when I asked him to because it was making me sick, I don't even have to eat the cinnamon to feel sick. Shrimp makes me vomit (sorry, yuck).

Any other foods give me only minor symptoms, and only seem to do so if I eat a lot of these foods. This list is huge and eating a small amount of anything on the list does not bother me. I am going to summarize the list here.

-The worst things are food additives including MSG but all food additives bother me. Anything with food dyes, preservatives, pretty much any canned or preprepared food bothers me. These things make my MG bad, but I don't notice any allergic response when I eat them.

-Sugar bothers me, too, mostly gives me itchy skin, and I am noticing that less sugar means less MG symptoms. I am having a difficult time eliminating sugar completely but I am working on it. Trying to only eat dark chocolate as my sugary treat.

-Acidic foods can be bad, too, I have to limit eating the sweetest fruits such as mangos, pineapple, bananas, etc. Citrus occasionally bothers me, but only if I have been eating lots of sugary foods. These fruits as well as any food or drink that lists Citric Acid gives me a sore throat.

(On the other hand, I must note here that if I don't eat fruits I get urinary tract infections...I have learned to eat one citrus fruit at least twice a week to avoid these infections. Citrus fruit or vitamin C is the only thing I have found that works to avoid these infections, in fact eating them in larger quantities cures an infection within one day for me, haven't needed antibiotics for a long time. So, I can't, or don't want to avoid citrus fruit.)

-And I am finding that foods in the nightshade family give me minor allergic reactions, or maybe they make me more susceptable to allergic reactions, and make my MG symptoms bad but only if I eat them every day (I love tomatoes and chilis!), these foods include tomatoes, chilis and potatoes. I don't think I am actually allergic to these foods, but rather there is some chemical process going on in my body that makes my immune system weaker when I eat them.

I hope that answers your question. :D

This wesbsite list is similar to the foods I have chosen to avoid, although I rarely get headaches. Sounds like there are multiple reasons to eat a more healthy, fresh food diet.

Thx DF, you def have some food allergies to contend with. I have been a life long hunter and fisherman so my family eats a lot of wild game - thus no preservatives and I think that is much healthier...
If you have not already tried it there is a natural sweetener called Stevia sold in health food stores that you may get along well with and I like the flavor...:)

Wild game is the best meat...I am sad that I haven't been able to enjoy any of it since I got MG...the meat in the store just doesn't taste the same as any wild meat. I do look for meat that doesn't have additives or that wasn't given hormones.

I have been trying out some teas that have Stevia as an ingredient, I like them so far. I've also been using Agave nectar in small quantities and don't notice the effects that sugar gives me.

Thanks.