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Learning about Myasthenia
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TOPIC: Learning about Myasthenia

Re: Learning about Myasthenia 25 Jan 2012 15:03 #1732613

I think you are so right with anticipating when a pill needs to be taken. I seem to be missing the early signs - but am getting much better now as I become more experienced!!

I went shopping one day and during the journey there my eyes were really playing up. I did the shopping hanging onto the trolley for dear life as the lights in the shop seemed to be affecting me really badly that day (that has been the only time its been like that!!) Then I took my pill when I travelled home. I now realise I should have taken the pill on the journey there!!!!

I find the morning times really good for me. I can get up at 8 and spend some time on the computer before taking my first dose at 9 (for convenience sake as I can usually take the others at 12 / 3 and 6 which usually lasts me until bedtime) That helps me with when the next pill is due.

I'm sure I will get better at reading the signals as time progresses .... and I am so grateful it is so mild for me when I read all your stories about your struggles.
xx Di

Re: Learning about Myasthenia 25 Jan 2012 15:05 #1732614

Ooooh ... I've become an MG Senior!!!!!!!!!!!!
xx Di
Last Edit: 25 Jan 2012 15:05 by crystalrainbow.

Re: Learning about Myasthenia 25 Jan 2012 15:08 #1732616

  • lindam
  • MG Forum Junior
  • Posts: 87
  • Karma: 0
And me an MG Junior! Something is desperately wrong with this picture if I can rise through the ranks (or fall through the ranks, as the case may be in 18 days since diagnosis!!!

Re: Learning about Myasthenia 25 Jan 2012 15:19 #1732618

You'll soon be rising through the ranks Linda

xx Di

Re: Learning about Myasthenia 25 Jan 2012 15:50 #1732620

  • lindam
  • MG Forum Junior
  • Posts: 87
  • Karma: 0
Just what I always wanted! You gotta be kidding!!!!

Re: Learning about Myasthenia 27 Jan 2012 10:47 #1732671

I wasn't sure where to put this!!

I might be 'missing' for a few days as I've got a new computer and am trying to transfer my data from my old computer to my new one!! Easy!! Plug in firewire - job done! NOT!!!!!!! I'll be back
xx Di

Re: Learning about Myasthenia 04 Feb 2012 13:08 #1732765

Well I'm back ... computer all up and running!!

I had four really good days when I was on the computer thinking I would be struggling to see but never did. Then the last couple of days it seems to have reverted to good periods and not so good again!!!

The one thing you can say about MG its how strange it is and impossible to predict what a day will be like
xx Di

Re: Learning about Myasthenia 04 Feb 2012 13:41 #1732769

  • alice
  • MG Forum Expert
  • Posts: 864
  • Karma: 6
I fully agree. The only truly predictable thing about MG is its total unpredictability!

Re: Learning about Myasthenia 13 Apr 2012 16:16 #1733572

Hello everyone.

I'm back from Cornwall.

For the last three years we have been trying to sell our house and move to Cornwall to be closer to our son. We were thinking it would never happen when a viewer made an offer on our house which we accepted but it meant we had to get down to Cornwall to find a property for us. We had a new build lined up but when we phoned to say we could proceed, it had been sold!!! We have found a house in Bodmin so it is all proceeding along.

So .... during a very stressful time (and more to come) my MG has been so stable .... I'm amazed!!!!!! The unpredictability of it all is .... so unpredictable!!!!!
xx Di

Re: Learning about Myasthenia 07 May 2012 19:13 #1733833

Just to let you know that although we haven't started packing the house up yet we are sorting out 47 years of accumulated stuff .... so I might not be around too much .... but I'll be back when we have moved (and in between when I have time!!!) and set up my broadband network - my very first important job!!
xx Di

Re: Learning about Myasthenia 09 May 2012 15:45 #1733879

  • ragdoll
  • MG Forum Gold
  • Posts: 1356
  • Karma: 11
Good luck with the move, sorry for the delay!!

Try not to do too much, when we moved I found it so stressful/tiring it actually paralysed me and I had to sit and do nothing!!

Re: Learning about Myasthenia 10 May 2012 10:25 #1733908

Thanks Ragdoll.

We are trying to take it steadily and not do too much at a time ... me especially!!! Its got to be done so I've got to get through it best way I can ................. fingers crossed
xx Di

Re: Learning about Myasthenia 28 Jun 2012 18:40 #1734531

Just to update you. We haven't moved yet. The husband of our sellers has been in hospital and had a couple of operations so that's put everything back until possibly the end of August!!! Our buyers, the man's dad died. Its still on track - hopefully - but quite delayed now. At least we've finished (almost!!!) the clearing out and there is a lull before the storm of packing and moving .... so we can relax a little .... that's the plan ... the Universe might have other ideas for us
xx Di

Re: Learning about Myasthenia 04 Aug 2012 21:11 #1735193

A further update. The move is on definitely now - thank heavens - at the end of August.

I've managed to stay reasonably stable but once we had the contracts exchanged and the dates sorted - my eyes went crazy for about three / four days. I really struggled to stay on top of things .... well .... I don't think I did ... I just got through the days. Then its all balanced out again.

I've just completed CN1 to send to the DVLA .... and what an odd form to complete. I couldn't actually see a section to put the reason for completing that form in!!!!!!!
xx Di

Re: Learning about Myasthenia 11 Aug 2013 03:05 #1737983

I wish I had popped all my posts in here to see how things are going!!

I've just had a CAT scan and when I mentioned to the doctors was it okay for me to have the contrast injection, it caused a flurry of activity. The result was that I could go ahead and that there might be some problems, but rare, but I would be well monitored.

Had it done .. first time ever. Felt a bit Dr Who'ish. Stayed in the department for half an hour and felt okay and then a couple of hours felt a bit hot and swimmy but thought it might have been psychological rather than physical. The next afternoon my eyes started itching and my face got a bit puffy but still manageable but by the evening I was completely wiped out so went to bed. My eyesight was very blurry and I had a dreadful headache the next day and felt very sick and felt out of it - but not enough to call a doctor, although it was borderline. The next day I didn't feel so bad but still too weak to get out of bed.

Now four days later I am up and eating again. I wouldn't like that injection again though.
xx Di

Re: Learning about Myasthenia 11 Aug 2013 18:59 #1737986

  • jantoo
  • MG Forum Senior
  • Posts: 445
  • Karma: 5
Funny enough I had one done on the 1st aug. and even though I had had them before, I went to get up off the thingymajig ( senior moment!) and as I sat up and went to stand I felt all swimmy and weird..had to sit outside to recover, first time ever... wonder if it will happen again, perhaps a different manufacturer produced the contrast dye?

Re: Learning about Myasthenia 11 Aug 2013 20:31 #1737988

That's a coincidence
xx Di

RE: Learning about Myasthenia 12 Aug 2013 12:43 #1737995

  • Jasdal
  • MG Forum Newbie
  • Posts: 47
  • Karma: 0
I was recently diagnosed in July - following a very alarming 7 months - and over 20 visits to the hospital..

For me the drugs prednisolene, azathoiprine and pirostigmine - do seem to control both the doouble vision and the general weakness - ( which it now transpires has remained undiagonsed since I was probably around 8 years old) - what I have learnt is we all experience very different things w MG - an exculude club it seems... but this forum has been fantastic - and has taken away my panic and worry about the future because it seems things could just as easly get better as worse. My view is that if we have to suffer from a "condition" - then I suppose this is not the worst - but then I have it mild at present....
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