Please don't be embarrassed about your questions. I promise you that for nobody on this site will think badly of you. We are here to support one another no matter what the issues are.

Now regarding your question, do you know if others have noticed the odor? Is it all the time or does the day start out okay and then you notice it by the end of the day? Are you sweating a lot with the mestinon and are you also taking steroids? Have you spoken to your doctors about this yet?

I've never been treated with IVIG so I can't speak to whether or not it can change your body chemicals to a such a degree that this might occur. If you are sweating so much with the mestinon as some of us tend to do then it is plausible that it could be manifesting from that. If you are on steroids, they can do the same. When taking both it can really be bad for some. Also, if you are on steroids they can raise your glucose levels and that can cause a yeast-like odor in some people. (You may have noticed this around some diabetics before.) Lastly, I don't think that tomato juice will help you but I understand your desperation. You might want to try an oatmeal or Epsom salts first. Keep in mind that both of these can be drying to your skin but it will take a lot less of those than it would tomato juice to do the trick. Until you figure out what is causing the issue, try using extra deodorant and powders to mask the issue. My husband uses Gold Bond powders to prevent offensive odors because he has always been big on sweating. It seems to work for him.

I hope this helps and I'm sure others will chime in too. Please keep us posted on how these or any other remedies work. We are big on education here. lol Good luck!

P.S. I must applaud your word usage. Not a lot of people would use "cloying". hehehe

sorry to say......never had an odor...as far as I know.
If you don't get anyone here who has experienced it I would say it would be worth trying another support group too. I think there is another one on line somewhere. I visited it once but didn't like the fact that it had so many people.
Feelings are all ok but No need to be embarrassed...that is what these groups are for.

Hi, and welcome to the group! Hope you find us friendly and helpful.

Mestinon gave me hyperhydrosis (made me sweat profusely). And of course that can be a real problem.
A quote from an internet site that says this can be caused by mestinon:
" Some areas of the skin have many sweat glands, while other areas have relatively few; they are present in the highest concentration in the palms and soles. In addition to sweat glands, skin also has oil glands that surround almost every hair root, the sebaceous glands. Finally in some areas, such as the underarm and the groin, are found a special, unusual sweat gland called an apocrine gland, which secretes a very thick type of sweat that has a large amount of fatty chemicals in it. These chemicals can be broken down by bacteria on the surface of the skin to create the smelly chemicals that are mostly responsible for body odor."

And why mestinon, which works by keeping acetylcholine around longer than it normally would stay, creates this sweating:
" For the sweat glands, the chemical at the tips of the sympathetic nerves is acetylcholine; too much of this chemical present next to the sweat glands stimulates them to produce large amounts of fluid."

And what to do about it? When I was on lots of mestinon, I carried extra shirts with me in the car, antiperspirant, aftershave (we men don't use perfume), and baby wipes to do quick spot baths. I also showered and used some manly scented soaps (diesel, gasoline, and stale tobacco). I thought about taking up smoking strong cigars.

The good thing is Mestinon was invaluable in getting me through until prednisone took over, but between the digestive system roiling, the sweating and the foot and leg cramps it was not great medicine. It did let me function. And of course prednisone was pretty bothersome too. However they both were worth the trouble.

Good Luck

Thank you all for responding. I should have been a bit clearer, I'm not sweating, there just is an odor that seems to be coming out every pore, my hair, my whole being has this scent I can't wash away and I can even taste it. Never experienced this till I started MG treatments but it is un-bearable. My husband says he doesnt notice anything that its just my imagination but it isnt. I do plan to talk to my Dr tomorrow and will let you know what he thinks.

Given the additional information you might consider whether or not you have a sinus infection. I have chronic sinus infections and I can smell and taste them as you've described. If your husband doesn't notice it then it may be internal thing. Some throat infections can do the same thing. Even if you don't feel ill an infection can be present. If you are seeing the doctor tomorrow you might want to ask him to order some blood tests and to check your ears, nose, throat and glands for abnormalities.

Good luck to you and please let us know what they find.

MIgurl, thank you I would never have thought of that!!!! I was beginning to think maybe I was completely nuts. :-)

Well my Dr didn't have a firm answer about my "percieved odor" but he thinks I may have Lambert-Eaton and has started tests for that. I have the muscle test in 3 days. Of course LE is associated with cancer and also the odor problem could be too. Time will tell and in the meantime I just have to endure it. Thank you all your help you are such a great example of the wonderful people on this site.
Hugs and best wishes to you all!

After discussing this odor problem AGAIN with my neurologist and explaining that not only does it smell like the plasma exchange treatment it STARTED with PE my Dr said he had never heard of it before but it was possible that some element in what they added to my system is somehow causing this odor. It actually is fading slowly and he said it should cycle out of my system over time.

If you find out you do have Lambert Eaton, there is an awesome private group on Facebook that will help with making your way through the ins and outs of that disease. I have Lambert Eaton, by the way.

Eureka! I found the cause of the "Reek" driving me nuts! It's Modafilil aka provgil. Given to narcolyptics people use it to stay awake and my neuro gave it to me to take for energy. I knew I wasn't crazy, it makes other people reek too. You can google Modafilil and Body odor and find a lot more about the problem. Needless to say this is one medication I am dropping immediately. Never really gave me noticable energy, just a body smell like bad eggs. Yuck, user beware this drug!!!!!!!!!!!!!!!!!!!

MODAFINIL- I goofed and miss-spelled it.

YAY!!! Glad you figured it out and that it wasn't something more serious going on. We don't often get the issues with easy fixes so I'm happy for you. :-)

We all deserve an "easy fix" every now and then, that is for sure.

Good News !