RINA NEL

First really strong sign was one evening in 2010. It was a Thursday and we were going on a motorbike rally the next day. I was sitting in the lounge and my husband came in from ouside. I looked up at him, heard the sound of a pitchfork in my ears and for a fleeting moment I had tunnelvision. Aftera few seconds it disappeared and I felt normal. Not…[Read more]

I have mentioned before that the pool is my lifeline in the Summer. I swim up to 20 lengths which is about 10 lengths of a standard olympic size pool. I also find that my energie levels go up quickly and hy keep my wet swimsuit on the entire day. It does effect my muscle weakness and my toes do a merry dance at night but, I take my last mestinon…[Read more]

Not so much. Sometimes it is frustrating when you know it is your neck and middle back that is causing your headache and discomford and a friend/family member suggests you should do this or try this or drink this….very annoying. I then blow my top and tell them in no uncertain words that I KNOW WHERE THE PAIN COMES FROM.
Somehow people always…[Read more]

A while back someone mentioned that he does not take Mestinon after 4 in the afternoon. I suffered from severe cramps at night. I used to drink my 3rd Mestinon for the day at about 7 at night.
After I realised that Mestinon only sustained the simptome for 4 hours I decided to space my Mestinon intake to 8 in the morning, 12 noon and 4 in the…[Read more]

I am so sorry to hear that your symptoms stayed. I really had such relief after my Thymectomi. It was good to have 6 years remission after all that. For me it was worthwhile.
Even though MGO is back and with it fatique and stress,the Mestinon and Azanum keep me relatively symptom free.

It took a year before my Neuroligist did a catscan of my chest area. Within an hour I was booked into the Heart Hospital and Thymus removed the next morning. Thymus wasn’t cacerous but had formed a huge growth which reached my heartsack. Lost a fair piece of sack in the prosess but within a month my eyesight were normal.
It took six years for…[Read more]

I can relate to all your difficulties. I had terrible double vicion before I had my Thymectomy. I fell over stairs and down stairs. They just did not exist. I did not have a choice when it came to the point where I had to decide whether to have the op oor not. It had formed a huge tumor behand my breastbone and during op a partbof my heartsack was…[Read more]

This has nothing to do with your eye. I had the same problem and sometimes the headaches were so bad that I wanted to just die. I thought I had sinusitis and went to see my GP. Nothing helped and then I saw the video and I realised it is ‘heavy head sindrome’. Eventually I ordered a neck massager and let me tell you I suffer no more. I put this…[Read more]

I live in South Africa and for me the cold pool brings a lot of energie back into my body. Hot doesn’t work for me. I can also not realy relate to the medications you mention. I only use Mestinon and Azanum and this keep my eyes straight and the droopyness at bay. I guess I am lucky that this is the case. I feel for you guys. Some days we are ok…[Read more]

My OMG miraculously disappeared after my Thymectomy in 2015. My eyes gradually returned to doublevision early last year. Very light sensitive still but I am taking Mestinon 60 gm x 3 a day and also take Azunum 50gm x 1 a day. I don’t have doublevision anymore although I have to wear sunglasses all the time…. even at night. But, my right eyelid…[Read more]

I get so upset when people try to force us into the same box. I have decided not to take the vax. It is my decision and I would appreciate it if people don’t get depressed about it. I see so many vaxed people now suffering from deseases that they never had before.

We go to town whenever and nit one of us contracted Covid but I know people, vaxed,…[Read more]

I think everyone feel the same about this. My husband now does a lot of the work around our caravan and tent. Luckily we decided to scale down, sell the house and permanently move into the caravan, before the flare-up hit me big time beginnig of this year. A while back I fell and my hubby could hardly help me ti my feet. I was devastated and cried…[Read more]

Hi Clair

Here in South Africa and especially the Bushveld areas like Limpopo province, where I live, the heat really gets to you. It is only 2 weeks into Spring and I get so weak and sweaty. So I decided to brave the cold pool now.  I usually only start swimming in October. Well, I braved the 19° cold pool and as I did 20 lenghts last year, b…[Read more]

live in sunny South Africa in a little province called Limpopo. Winter is over now and the heat is terrible. I now experience that the heat and humidity is having a huge impact on my life. I am weaker and sleepy vety early in the day.
<div dir=”auto”>Our cold swimming pool will be usable now and that will definately help. Last year before my MG…[Read more]

I have only got a fan, I live in a caravan and today it reashes 35° C here so I will go for my first swim after Winter break.

So guys wish me luck.

I have trouble sometimes swallowing the smallest pill. It just stuck and don’t move. But lately after I’ve eaten I would feel like the food is stuck and don’t move down immediately.

As I said,  I am new to the Forums and I would not know if other MG’s experience the same. It is very uncomfortable at times.

Thanks for the welcome Tim. I remember that my leg pains started just before I was diagnosed. Now I suffer from legcramps. I don’t know if this is the same for others with MG.

I was lucky though. One of our friends, he passed away since, came around one morning after I had a desperately crampy night and held out his hand. In it lay a magnet. You…[Read more]

I live in terrible South Africa. I am 71 years old and I go anywhere. I sanitize before entering a shop and I keep my mask on all the time. Lucky for me I need to have my darkglasses on all the time as my eyes are so light sensitive.

I have decided that I am nit going for the vaccine. Quite a few people around us died in the last couple if weeks…[Read more]

I have written a whole story just now and then pushed the wrong button and here I am, having to start all over.

I had a problem with watery eyes long before I was diagnosed with MG. After my Thymectomy it disappeared. I don’t have that anymore although the light sensitivity is still an issue.

I can so relate to people with urinary disfunction.…[Read more]

I am new to the forums. I was relatively ok for 6 years after thymectomy. Still had sensitivety in my eyes but I was ok. Then dubbelvision again and suddenly weakness too. One thing that I now experience is exhaustion. I would sweep the floor and suddenly can’t breath. It is utterly rediculous. I fell the other day and could not get to my feet. My…[Read more]