[Ronald]

My neurologist says you are in remission when you no longer need mestinon

sounds simple I feel that I am almost there as some days I can get through on 2-3 mestinon 60 mg however i take two myfortic 500 mg per day and 5 mg preg so getting to remission must include no meds first then no mestinon

i do take vit D 200 mg ubiquinol astaxanthan and I feel this helps

[Ronald]

I have recently started with water Kefir if you don’t know it you can google it

this is very easy and simply to maintain the production

i also eat plain natural unsweetened yogurt and I find that this helps to replace and maintain the healthy stomach bacteria which in my case seems to be lessened due to the medication

my other daily supplements are vit D Ubiquinol 200mg and Astaxanthan

I am not in remission I do take mestinon 60 mg as required and as fewer times as possible myfortic 500mg twice a day and 5 mg preg

i play tennis 4 times a week for 4 hours plus and this makes a big improvement to my day

cold swim every morning including winter and infra saunas at least every week

I do get IVIG every 4 weeks now being extended to 6 weeks to try to wean me off it

hope this helps in some small way

all the best Ron

 

[Ronald]

It would be helpful if you would share the lists of does and donts on supplements from your neurologist

[Ronald]

Tom, I was put on Lipitor 60 mg to lower cholesterol within 3 months I had MG this was back in 2015. I have not take Lipitor since.

My MG continues I have had my second booster Pfizer  and this time I have had symptoms for the last 4 days and I hope these will allow me to play tennis tomorrow which will be five days after the jab.

my meds are 5 mg pred mestinon daily 60 mg 4 times a day and before I got Covid a month ago I was taking 500 Mg myfortic twice a day plus IVIG monthly and this has kept MG under control.

when I got Covid I was asked to stop myfortic I was put on antiviral meds and this seemed to clear the Covid within 7-10 days and I remain off the myfortic as I feel well however I will talk to the neurologist today to confirm whether to restart myfortic

mestinon gives me urine urgency and I now sleep with a bottle as night visits to toilet could be four or more times

I now sleep with a apnea machine which makes a difference to frequencies as I feel that the constant waking is a trigger to urinate which if I am sleeping is less of an issue.

I normally play tennis doubles 4 hours  at least 4 times a week which I am very pleased about however the MG has caused the loss of strength in my monkey muscles in legs which means that I cant stand on toes or walk on heels which impacts on my running greatly.

supplements include Vit D,astaxanthin.krill oil, CoQ10 Ubiquinol green tea low carbs and red meat Mediterranean diet plants fruit and veggies and reduced sugar

I have spent many hours researching the net looking for reasons for this disease and natural cures and this continues with the hope that something will make a difference

I am very grateful because I am doing most of the things that I want to do except that i have a lack of confidence to travel and be away from medical assistance as I have experienced a crisis something that makes me realise how this MG can impact on one’s life.
I feel that fresh air exercise sunlight and most importantly connecting with others to make you feel like you are still part of normal society and this has been my reason for keeping positive

Thanks to all who share their stories as this is very reassuring knowing that this disease is not always the same for all people and we all react differently to meds

it would be perfect if one day medical science would come up with an injection that would suppress the one antibody responsible for theMG rather than suppress the entire immune system.

I have been given Retuximad which is a sledge hammer to the immune system meaning that the B cells are suppressed which are responsible for building new antibodies meaning that my response to the Covid vaccinations has been almost zero so I ask the question from the immunity Dept in the hospital what is the purpose of me having the vaccinations when I can’t build a immune response and they simply don’t know and continue to recommend to get the vaccinations which I have done.

all the best everyone we all need to place our trust in something to help us and medical science seems to be acting to do this