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.

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...

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.

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.