Another update

Well the last couple of weeks have been very up and down, had some very bad days when couldn't move off the couch and got very depressed. I had my meds increased and they are still increasing the dose gradually with mixed results, had one small crisis with breathing which thankfully only lasted a few minutes. I have seen the neuro 3 times now and my symptoms persist and are getting worse. My neighbor noticed that the muscles In the lower part of my left side of my face aren't working so on bad days I look as if I am paralysed on that side.

I get very tired and can't walk more than a few hundred yards, I have about 3-4 hours in the morning that I can be normal, then too tired for the rest of the day. Yesterday I started on an immunosuppressant which they give to transplant patients, it's not licensed for Mg but trials in the US have indicate that people respond well to it and indeed I have encountered a few people on the forums who say they are symptom free after taking it for some months and without the horrid side effects of many of the older drugs which are prescribed for Mg now but were originally designed as chemotherapy drugs with all the associated side effects. I agreed with neuro steroids only if I have a crisis which requires emergency admission.

And the GOOD news is that throughout this NO AF! Don't think I could have coped with that as well!

Went to see my lovely GP yesterday for the last time, I got so emotional as he has been my shining light, such a lovely man with high standards. The good news there is that he is now taking a role inspecting GPs and making recommendations for good practice so hope for others if he has anything to do with it! He gave me a hug and thanked me for being such an 'interesting' patient and told me not to pick up anymore rare conditions! Yeah, like I collect them. Just hoping that my new GP, a lady, is half as good. He has briefed her about my conditions and he has told me that she has encountered Mg before so sounds hopeful.

We have had such beautiful weather here in Devon, the end of the crops meant I have been making tomatoe chutney and making apple juice to freeze. Unfortunately haven't felt up to blackberry picking, step too far for me but hopefully next year.

Last week had a really good day so husband a took me sailing in the bay with a friend. Unfortunately didn't end well for reasons I won't bore you with, and I ended up in bed for the days after but it was WORTH it! Oh to be out on the water on a sunny balmy day!

Taking Cellcept means I am photosensitive so can't sit in the sun any longer so am actually looking forward to winter drawing nearer, can't believe I am saying that! Providing I am well enough, we are going to Spain in a couple of weeks for some late good weather, am going to try to get a bit fitter by walking and swimming.

If you have been, thanks for reading........

11 Replies

  • Oh and Monday I formally retire!

  • HI,

    You are remarkably strong and your post has touched my heart..

    Interestingly just opened my mail and a letter from my dear Quaker friend who lives in a Grace and favour cottage in the new forest saying word for word the same as you..".Collecting and pressing apples and making tomato chutney" This is therapeutic in itself...

    Wishing you well,


  • Hello Dreamer and thanks for the update. Devon is indeed glorious at the moment. I have enough apples left for one more pie and the baby tomatoes in the green house have somewhat beaten me this year as have the runner beans which have gone over now. The blackberries are super this year and all along my hedges where I really shouldn't have them! I think the swallows are off now as I haven't seen them for a day or so but never spotted them all gathering on the phone lines so maybe not.

    Good luck with your new treatment and so glad the AF is staying away. Keep us posted please.


  • Devon sounds wonderful karen

  • It's a tonic to read your posts as you are battling valiantly and it's quite inspirational. Glad the AF isn't being troublesome and hope the new meds are effective. Buy a big sombrero and enjoy the warmth of Spain. Happy retirement!

    My nice GP retired about 10 years ago and my new one is every bit as good as the original who was my staunch support through several big events in life - both happy and the opposite. This one rather has the short straw as I'm much too tetchy about AF. Hope you find your new lady will be supportive and on your wavelength.

  • You are really being put through the mill but are staying so positive. I don't know how you do it. I hope your treatment starts to work very soon. Enjoy your holiday.x

  • Life really kicks lumps out of one doesn't it. I love your posts for their honesty and generosity. Your day on the water and in the sun sounds idyllic. Spain should be lovely this time of year, soak it all up and let us know when you get back.

  • Hi, it's so good to hear that you don't have AF any more. Like you I always had to do everything in the morning when I had more energy. However, I've recently discovered that I'm not so tired in the afternoon if I have a very light lunch (no carbs) and sip water throughout the morning. Would be interested to hear if doing this helps you.

    Hope you soon feel better.


  • Have a super holiday. My best wishes. Kath

  • Thank you everyone for your very kind replies.

  • Hope you are well enough to go to Spain - you certainly deserve a holiday.

    Happy retirement!

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