Just a quick hello

Morning all, (afternoon and good evening to those of you in different time zones).

Unfortunately I have woken up again with ptosis and right sided facial weakness. My stomach is complaining due to taking 30mg x 3 of mestinon yesterday. It only worked for around 2 hours at a time and was taking a good ninety minutes to be absorbed into my blood stream. So either my stomach was on a go slow as it usually works within 15-20 minutes or I needed the full whack of mestinon in my system for it to make a difference.

I feel like I am stuck between the devil and the deep blue sea today. I feel dreadful and I know I will feel better taking the mestinon…….but do I want the stomach cramps that go with it? 30mg is obviously not enough so do I take 60mg and hope for the best. This is getting like the bad old days of 2007 where for nine months I had ptosis continually. It took around 9-12 weeks for my vision to adjust to only having usable sight in one eye. The brain is an amazing thing as long as I was in a place I knew my brain would step in and create the rest of the picture for me. You know the stuff I would have seen with my right eye had I been able to open it. That’s pretty cool until you realise that you can’t actually see on the right hand side because you have just fallen over an obstacle that your brain wasn’t aware of. I still think how the brain compensates though for loss of vision on one side is incredible.

Although I only have vision in one eye today, due to being unable to open my right eye I am feeling more confident with it today. Yesterday I felt so scared and vulnerable with my poor vision, today I am ok with it. I hate the fact I get so scared when I can’t see, it really terrifies me. I lose my hearing before I faint and that doesn’t bother me, but losing my vision terrifies me. I wonder why that is?

The only time I have not had problems with ptosis and double / blurred vision was when I was on 20mg of prednisolone daily. I may have had to toss in the odd mestinon but on the whole it was an awful lot better. When will they (medical profession – mainly neurologists) realise that this is either ocular, bulbar or generalised Myasthenia Gravis? What else could it be?

Ok my eyes are getting sore now as I am not blinking enough and they are drying out. So I will sign off for now. Thank you for reading.

Before I forget I believe in the USA (it may also be the case in Britain) that this is Myasthenia Gravis Awareness month. So lets raise the profile of this awful disease.

Apologies for my absence

This is just going to be a quick update to apologise for not updating my blog, there are several genuine reasons (feel like I am at school explaining why I haven’t handed in my homework! lol)

1. Had no Internet connection from late friday night until Sunday 11am BST

2. Due to humidity / heat I have had an increase in my MG like symptoms. I have had pretty much constant ptosis, double vision and blurred vision, which is not conducive to using a computer screen. Mestinon will open my eye but it doesn’t get rid of the blurry vision or the double vision. Also in these symptoms very weak shaky legs. Its very much like when I first got ill in 2007.

3. Pain not being very well controlled.

Ok so those are the reasons. If there are any massively glaringly obvious mistakes that I have missed in this post its due to my vision being extremely wonky. So apologies ……again.

I have a physio appointment next week on Wednesday……or should I say torture session because its going to hurt. I am so deconditioned anything above and beyond my normal level is going to hurt. Luckily the place I am going to is the pain management clinic and physio department.So might kill two birds with one stone.

As I haven’t been on any Internet sites properly for a bit I have a bit of blog reading to do so apologies for not swinging by your posts. Its highly unusual for me to be absent this long. I hope you understand.

Special message for Rachel who writes this crafters Yarn.

You may have noticed an increase on your visitors to your page. This is because Midmomga on Twitter has advertised you as a good MG blog to read. She has signposted your readers to come via me due to my blog being linked to yours……So exciting. So if anyone searches twitter for MG your blog will come up! The message reads as follows..(exactly how it was on twitter)