i also drink alot of diet soda for the caffeine - i do no drink coffee and i absolutely hate water - i do eat banannas but i struggle with diarreah i take mestinon 90mg 4x's a day and 180mg long acting at bedtime i also have done plasmapheresis which did not help as well as ivig - i have been doing ivig for the past year until my new insurance (aetna) does not cover it due to maintenance (i was doing it every 8 weeks for 2 days) for mg according to aetna is experiemental. my neuro only gave me prednisone when i was in iciu
he is not a big fan of it due to the side effects and neither am i

i eat at least 2 bannans a day also because of the severe diarreah - but also since you were talking about weak muscles from your potassium being low and how do you know - how do you know if your muscle weakness is from the mestinon - i take mestinon 90mg 4x's a day and 180mg long acting at night

there are so many bad things for mg that we cant take but that we need to help us with all the other side effects - what does your neuro say to do

Hi there! I am on TONS of meds right now in order to keep my MG @ bay. I am on 20 mgs of pred, 480 mgs of mestinon, the list oges on and on........

I was originally against pred, due to the side effects, but need it in order to get out of bed. I have a love/hate relationship with it, but am so thankful that I'm able to live again!

I was also getting IV IG monthly - as my neuro tapered my pred from 60 to 20 mgs in hopes of remission, but am feeling pretty rough right now. In fact, I am thinking about calling him 2morrow to set up another round (5 days @ 500 mL) - just in case!

I can;t believe you were denied IV IG! THat is awful! I hate the plasma exchange! It was waaaaaay too invasive for me! That and being stuck in the hosp for the entire time - I hate being away from my fellas!

Luckily (for me), I hav a very aggressive neuro who really listens to me! If I tell him I feel yucky, he gets me in the hosp that day!

Erin

thanks for answering back

People with any autoimmune disease have a higher prevalence of gluten sensitivity. If you are willing, you might try a gluten free diet trial for a couple of months, and it wouldn't be a bad idea to take out casein and soy for that period, too. These food sensitivities are associated with other autoimmune disease and neurological disease.

Llonghair who posted here breifly long long time ago... had an MG diagnosis...but finally discovered she also had celiac disease. She was sick for many years... and the chain was like this:
First diagnosed with Leukopenia then Thrombocytopenia then Fibromyalgia then Axonal Neuropathy then Myasthenia Gravis then Celiac.

A gluten free diet, and correcting her Vitamin D3 and B12 deficiencies have helped her to regain her life. She is much improved. She does not take any drugs~ only vitamins.

I searched her old posts here, but most of her story was told before this forum opened.

You might try pm'ing or emailing her to ask about her experience... if she recieves notification you'd likely hear back from her.

Welcome firstly, great to have you here.

The easiest way to test for low potassium is to ask your dr to do a blood test.

Its true too much mestinon can be as bad as not enough. I started lowering it myself (with my neuros approval) by leaving it for an hour over my next due time, and kept a watchful eye on how I was feeling. I did this over a weekend. When I felt I needed another mestinon I took it, I use to be on 4X60mg and a timespan at night, now I take 2X60mg, one in the morning and one at lunchtime.
I also have Lofenoxal on hand which helps with my diarrhoea, as I was sick of having accidents. These I find much kinder than the over the counter meds, which stop me up for days.

Hope this has been of some help
take care
Kate

This isn't exactly about foods to eat / avoid, but for those with problems with the diarrhea and side effects of Mestinon, has your neurologist prescribed any anticholinergic medicines, like hyoscyamine or glycoppyrolate, to block these side effects? I take 90 to 120 mgs of Mestinon 3 - 4 times a day, plus the extended release tab at night, and haven't had any problems with the side effects as long as I take the glycoppyrol. Just a thought...

I'm not a doctor, but 90 to 120 mg of Mestinon 3 to 4 times a day seems to me a curious dosage. Personnally, I would stick to the regular 60 mg pill but take it more frequently, i.e every 3 or 4 hours (every 2 hrs if necessary), could you talk to your neuro about this?
Another point, do you always take Mestinon with a little food? I think Mestinon on an empty stomach, is asking for problem.
Maurice.