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June is Myasthenia Gravis Awareness month ❄❄❄

As June comes to it’s end it would like to try and raise a little bit Awareness for MG. Quite often people don’t really know what MG is. That itself wouldn’t be a problem. Even though I’m a trained physiotherapist I still don’t know every single disease. And do be honest, I haven’t heard of MG either before I was diagnosed.

Quite often people tell me „Oh just be glad that you didn’t have a stroke or be glad you don’t have MS“. Wait what? There is no „better disease“. You could have a mild case of #myasthenia or a severe case. You could be lucky and have only suffered from a mild stroke or you could die from it. Same with MS.

So please, it’s not a big deal if you don’t know it. But than ask and don’t just simple decide that it is probably not a big deal.

Let me tell you a little bit about the last three years. (I was diagnosed about 3 years ago).

Before I was diagnosed I was quite active and working as a physiotherapist.

Just a few weeks before onset of symptoms (April 15)

When I realized that something was wrong it was the end of June 2015. It was by accident that I got to a neurologist (since I have #epilepsy as well I just had a check up and they suspected something was wrong and that it has nothing to do with epilepsy). I got admitted and by the end of July I had a suspected diagnosis of myasthenia Gravis. At that time I was still able to walk but had quite a few difficulties. I went to rehab and it really helped me (As I’m writing this I’m in this rehab again for the fourth time since 2015)

I looked pretty normal and I thought that as soon as I’d take pills I could continue working as a physiotherapist. The rehab doubted it from the beginning and by the end of rehab I finally realized that I would not be working as a PT anymore.

Though..if you would have looked at me at that time, I was looking perfectly healthy. I went home and on vacation a few weeks later. People wondered why I wasn’t able to work yet able to go on holiday. Well, I didn’t look sick.

I don’t look like a typical MGler. People always expect the droopy eye which I do have but not always and I usually don’t put those on facebook. (Fall 2015)

As I was unable to work as a PT anymore I decided (the rehab had recommended it previously to me) to do a vocational rehab. During Spring 2016 I had an assessment two that we could evaluate which Job might fit. During this evaluation I realized that walking was getting more and more difficult and decided to look for a adaptive lightweight wheelchair. I thought that it was just for „sometimes“. I was wrong.

The first crisis came in April 16 and at this time I thought that it was also the last. I was so wrong. I got #IVIG and went to my rehab clinic again. During this time my wheelchair was delivered as well. Boy….it was a huge relieve as walking was getting more and more difficult.

Wheelchair was new. Photoshooting in summer 16

Well now I at least looked disabled. LOL. But still people thought that I could basically everything…except walking. Heck no….I had breathing difficulties, problems with lifting arms (therefore showering etc) but again…the typical droppy eye is missing not on those pictures 😉

In Fall 2016 I experienced my second crisis and decided to have a thymectomy which was done in December 16. And guess what? Yeah sure. Crisis again. This one basically left me unable to walk and I didn’t regain much of that function again.

About 10 days after the thym ex and crisis, just out of hospital and having a nice moon face from prednisolon

I went to rehab once again where I got to try a new gadget, the #Vector. It really helped me to walk almost like a normal person since onset of MG. Believe me or not, I was basically crying out of happiness.

Here you can see why 😉

I started my vocational rehab in Summer 2017 and soon after…another crisis. It was too much. So I went town from doing it full time to part time which really helped. In February 2018 I decided to try and get again into rehab again to gain some more strength. It was approved and my starting date set to June 6. And guess what? I was end of May when I slided into another crisis.

Having a feeding tube is always nice….NOT
With my Bipap in hospital. I don’t have any picture from the acutal crisis

And this crisis was the most annoying ever. I’m on regular IVIG and got transferred to the hospital that is normally treating me with exacerbation (no crisis when I was transferred!). The crisis was caused my the treating Neuro who refused to give me IVIG, messed up my pills until I was unable to swallow, breathe and move anything below my head! Thank you very much! NOT. Up to this day he keeps saying I only have a mild case of MG and that everything else is psychosomatic. That I never had a crisis (wonder why I needed Bipap permanently, a feeding tube etc) and that I never had ANY swallowing issues. He still refuses to treat me up to this day. I got treated for MG crisis (wait what…thought it’s all psycho *sarcasm off*in another hospital) and after getting IVIG I was finally able to control some movement.

I’m currently back in my favourite rehab clinic where I’m hoping to gain some more strength and pretty excited for my therapies again. Especially the #Vector 😍

This is me right now….wearing a teal shirt with snowflakes and teal hair for MG awareness

Every snowflake is unique. Sometimes literature tells you about how a person with MG looks. It might be the case but it does not have to be the case. In my case…a droppy eyelid is not my main issues. My main issues are walking (full time wheelchair user), breathing (I have a bipap) and lifting my arms. And as you can see in the picture abough…you might not be able to see that.

I may look healthy but that doesn’t mean I am healthy. Do not judge from what you see.

#myastheniagravis #seemenotmg #ihaveheardofmg #wheelchair #wheelchairgirl #snowflakewarrior #adevilwithsnowflakes

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