Myasthenia Gravis

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    Hi all! My symptoms don't fit any known illness criteria, so I decided to share them, hoping to spread awareness/ask questions for my really weird symptoms, so here it goes: anytime I eat more than 700 cal of more than 2 types of food, I get severe generalized edema of 6-8lbs of weight gain, allover my body, especially soft tissue in my face, back, and arms and thighs, and get severe pain (on touch, pressure and all over my body) and fever of 101.2-101.8 for about 24 hours which subside only if I starve myself for another 24 hours. This painful edema, fever and burning pain(all over my soft tissues, and esp. my back) all occur together after eating anything above 700 cal or salt above 150mg- (which I don't eat anymore). My eyes are swollen shut, pain everywhere, fever, back pain, yet skin allergy tests all came back negative, including inconclusive celiac disease- but most my symptoms aren't triggered by wheat but by Salt and overall calories: any meat, rice, eggs, pasta. bread, fish etc. Basically, ANY FOOD in excess of 700 cal AND/OR more than 100mg salt causes these symptoms!!! So I live in a hungry hell: for a few days I force myself to live on 2 apples and 200g of pure broccoli, and another day I eat 400g cauliflower and 200g papaya and 50g avocado. For anyone thinking I have some hidden component allergy: I don't eat any processed foods like hamburgers, breads, or cereals, or anything really, only pure single ingredients foods. still I cannot go over 700 cal or 150 mg salt!!

    2 reactions 1 comment

    new here

    I was just diagnosed today with TN. Had it 35 years ago and it has been in remission for years. I'm so uncomfortable, waiting for the meds to kick in although it might take days. Doctor prescribed Gabapentin 100 mg 3x daily. How long does it take to feel any relief? Anyone taking this? Side effects?

    Going camping this weekend and I don't want to be a zombie!

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    Loosing hope

    I joined the mighty last year but I have yet to really post anything because I guess you could kind of say I was in denial. I don't know where else to turn. The beginning of last year I was diagnosed with erythromelalgia and for the most part trial and error I've been able to control the flare-ups. But lately it seems to have gotten worse I have had this flare up for the last 5 days and the pain the pain feels like it's breaking me. Of course I've reached out to my physician and all he wants to do is get the opinion of hematology to see if they have any suggestions and of course they do not. I don't know how much longer I'm supposed to be able to handle this pain. It messes with my mind. It's scaring the hell out of me that I can't control this pain. I feel like it's breaking me and I don't know where else to turn to. The doctors have me on 325 mg of aspirin a day as well as 60 mg of cymbalta which I take religiously. I just want a break from the pain today was the first day I got out of bed not because I wanted to. I just know that I don't know how to deal with the pain anymore. I have great family and they will talk me through the pain but they're not always available. I don't want to say I'm losing hope but I am and I've always been a positive person but I don't see nothing positive anymore. I've changed my entire life style because of this condition. And for what I still have no help with the pain I still have no answers. I cry every night every time. If anybody has any suggestions please advise me because I feel like I am crawling out of my skin and I don't want to do this no more I don't want to feel this pain anymore.

    1 reaction 2 comments

    # day to day events 2-22-23 and days prior # anxiety- at times. # diabeties

    Blog: 2-22-23: Well, wanted to get back to you - just I have so much on my plate right now- seems like I can’t take a break- but just had to-
    Went to dr on Tuesday for my follow up after diabeties diagnosis on Nov 15, 2022. I think that was the date.
    Results of Tues drs appt- 3 mos later after initial diagnosis : lost 44 lbs; A1C 5.5. Results- no longer considered diabetic!!!
    Feels so wonderful!
    Dr pleased!!

    Have to have to say: thank you, Thank you for your comments and hearts 💕. I really, really appreciate all you had to say and all your input!!

    Congrats 🎈🎊🎉 to the woman who posted a reaction to my blog several days ago!!! Kudos to you for losing the weight!! Congrats, congrats!! 🎉 congratulations 🎉🎊!! Keep on keeping on!!!

    Dr said - to continue w no alcohol, the exercise and the dieting. She cautioned- said your A1C can shoot up w/o even realizing it. So, continue to watch what you eat & drink.

    I said, “ sure thing, but don’t know for sure how long I can keep these regimented meals up.”

    She said you really have to because you have to be concerned abt your sugar level for the rest of your life . Just watch your sugar & carbs.

    But, I have a bit of wiggle room now- I think- of course don’t I want to get carried away.

    I pointed out to the dr that it is up to me whether I want to continue w/o alcohol.

    But, you know - I really don’t mind this so much.. the nonalcoholic beer I drink tastes like the real thing. And after I drink it I can do what I want-,drive, take a walk, go on the treadmill, do and go about anything/anywhere. And no headache the next day. -
    The nonalcoholic wine, I get similar benefits.

    The nonalcoholic wine has some sugar, carbs??can’t recall. But, from what I read it is not all that bad. I have to be sure to drink it in moderation. As the nonalcoholic beer I drink- it has some carbs. But, as a rule I have but 1. 1 n/a beer or 1 glass of n/a wine. It is okay for me. If I have a second- of the n/a wine- not horrible- and the n/a beer- well it comes to a number of carbs- so not often, rare, only happened once.

    Well, I don’t have too much more to say. I wanted to share my good healthy news.

    Oh! I think the reason for the weight loss was due to my psychiatrist cutting my medication in 1/2. I am now on 1.5 mg whereas before I was on 3 mg. I think this made the difference in the weight. It seemed like my appetite shrunk overnight. Because of this- losing the weight- was really a no brainer.

    I understand lowering the medicine one takes may not be an option for everyone. Whatever your situation is- I wish you luck!!

    Take care and best wishes!!

    Healthy eating for all or best wishes for eating the best you can.

    Have some sewing to do. And a lot of stuff to get done. I really appreciate your reactions and comments. If I don’t get back to you right away or wait until the next time I enter into my next blog- pls be patient and pls understand., I just have a lot on my plate. I still work and have a lot of other stuff that needs to get done. So, much of the time I do nothing- and then get a surge of energy- there is a lot I haven’t done that needs getting done.

    So, thanks again for your responses if any- and if you can’t respond or just don’t want to- np. I appreciate you reading. And if you don’t wish to read - that is fine w me also- it is nice for me to connect or have a means to connect- even if there turns out not to be one!!

    Thanks again everyone- best to you & take care!!

    2 reactions 1 comment

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    I’m new here!

    Hi, my name is pawttato. I'm here because I've been diagnosed with a rare autoimmune disorder called myasthenia gravis


    4 reactions 5 comments