[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 really! I was soo sleepy and could not keep my eyes open but the moment I laid down to sleep I was wide awake.
We went off thevnext day but then I couldn’t drink from a straw and whenever we stopped, I would fall down on the nearest patch of grass and tried to sleep.
I checked myself in the mirror and saw that the right side of my face was drooping and my right eyelid would not lift!
I went to see my dokter on the Monday, he booked me into the hospital and got a Neurologist to come and see me. I was wearing dark glasses now because my eyes could not take any light. I told her about the light-sensitivity and the eyelids that would not stay open but she said I had a stroke. I said no, this is not a stroke even though the right side of my body was now rather a lot weaker than the right side.
It was only in 2015, after a long period of double vision that an eyespecialist diagnosed me and a huge growth was removed with the Thimus. It had already grown into my heartsak and I had lost 34 kg in the proses.

[RINA NEL]

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 no later than 5 in the afternoon. Helps with the cramps caused by the Mestinon.

[RINA NEL]

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 tend to know more than you.
I suffer a lot from cramps in my legs…even when I am sitting in a restaurant I will have to jump up and stretch my legs to get the cramps out. And then you will get it: try Manesium, take more salt etc.
I sometimes feel like swatting a person to the ground when this happens.

[RINA NEL]

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.

[RINA NEL]

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 double vision and fatique to return and only because I was given the wrong medication,oxibuton, and now only take Mestinon and Azanum. Eyesight and fatique better now. I live an easier life now. When I am tired I rest for a while and I negate the heat with the swimmingpool.

[RINA NEL]

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 removed also. It had grown into the sack. About a month after the Thymectomy my double vision vanished. The light sensitivity stayed. I kept wearing my dark glasses wherever I went. Church, mall, movies, indoors. It got better but six years later, beginning of last year, it came back. Double vision, tiredness and now depression also. I am taking 60mg Mestinon 3 times a day and 50mg Azanum once a day. I suffer from leg cramps and sometimes my magnet helps but my GP prescribed Aspin Quinine Sulphate Tabs 300mg. I can only take this 3 consecutive days at a time but it helps a lot. Ad soon as the cramps return, last time took about 7 days before I had to takev it again. My GP is a Homeopathic Dr also and for my depression he described Lithium Orotate. This is a wonderful pill and keeps me chirpie through the day.

This, I hope, will help someone. My diplopia is only realy evedent when I am very tired. I think I am blesses?

[RINA NEL]

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, who now had Covid twice. I rest my case!

[RINA NEL]

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 for days untill my GP, a Homeopath, subscribed a natural anti-depressant: Lithium Orotate. Now I can get through the day and don’t feel so useless. I insist on doing the beds and sweeping the tent and gazibo although I sometimes wake up and Hendrik had done the sweeping also.

[RINA NEL]

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, before MG flare-up, I expected to only do about 4 lengths. When I hit the water and started swimming I couldn’t stop. My energy levels shot up. I eventually did 12 lengths and could not get out of the water. I felt so good.

So, I think, we do better in cold. I read that extreme cold are not good for us but let me tell you it is better than the heat.

Just on a nother point. I will not take the vaccine. Just my choice.

[RINA NEL]

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.

[RINA NEL]

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.

[RINA NEL]

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. Although I am the one and only MG in my family (on both sides) I also inherited urinatytrack disfunction in droves. Since I was a small child I was the one who could never laugh without wetting myself. It was humiliating and frustrating. I am a sunny personality and I just love laughing. My husband would go looking for me when I go walkabout and he will just follow my laugh.

So as I am sitting here reading MG forum replies, being as pooped as I am, I feel for you ouks and you also have my love.

I am pooped because I clean my tiny kitchen, we retired in our caravan, once a week. I clean everything and wash the floor. I do this because I want to have some control of my abilities. I am soo tired but in a way I am very satisfied.

Come Summer I am going to swim again. I did 30 to 50 lengths of the pool before my MG flared up with a vengeance. But, I want to atleast do as much as I can.

[RINA NEL]

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 leggs just wouldn’t work. I suppose you could call this a flare up? I have so many questions. I would like to share my uncertainties. 

[RINA NEL]

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 afternoon.
I must thank the gentleman who suggested this. I am sleeping better and the cramping are not so severe. I don’t have to jump up during the night to flex my leg or foot to relieve the cramps. I am in a good space where cramps are concerned. I can live with it the way it is now.
Thanks to the forums I could pick-up on very good advise.

[RINA NEL]

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 thing on every day for 15 min and headache gone. It is such a relieve. Just something that might help. Oh yes, no more pain in the eye

[RINA NEL]

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 and some days not so much and then I think if you all with great empathy.

 

[RINA NEL]

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 does not droop as much although that eye is still incapable of looking up and the left eye is still shooting upwards. I am sure Steven Spielberg could use me in most of his horror movies 😂😂

[RINA NEL]

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 flared again I swam 20 lengths a day. Now I hope that I will be able to do atleast 5.</div>
<div dir=”auto”>The magnet is still doing it for me. I now travel with it wherever I go. I would not be able to sleep without it.</div>
<div dir=”auto”>My neck bothers me a lot but my husband gives me a message before I go to bed and that helps a lot.</div>
<div dir=”auto”>Mestinon keeps my eyes from dubbelvision and that really helps.</div>
<div dir=”auto”>One of my friends today said:Rina I just can’t believe that you are the same person as a year ago. You were the one with the energy. You kept us going and now you are just a shadow of that person.</div>
<div dir=”auto”>I am only glad that there are people that know what I am talking about when I experience all these crippling symptoms.</div>

[RINA NEL]

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 know, round with a hole in the midde? Apparently these are used in Microwave ovens! He said it helped and since he kept that in his bed his cramps had abated. He is not a MG si I thought I’d try it. I promise you ni more cramps…. narra! My toes used to start playing piano and still do but the moment I get into bed with my magnet…. my friends think this is soooo funny…. my toes calm down immediately.

Just a little advice that might help one of you or a family member.

[RINA NEL]

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 after taking the 2nd shot. They were healthy people. We take Ivermectin every 2 weeks and I just feel that we need to calm down.

Just saying.

Rina Nel