Update

[CDreamer]

Hi everyone

This Mg journey is akin to my original AF journey with many parallels but the difference is I am now much better practised at managing my consultations. 2 hospital appointments this week, had 3 hours of testing at the eye unit and yesterday another CT scan. The one difference is the amount of screening, I go for monthly screens for my eyes, which I am pleased to say have improved since starting a drug called Pyrimidstigmine which helps with symptoms, but is not a treatment, I now have a clear, written down, treatment plan and apart and fell well supported for the physical symptoms, but as ever, no help for the psychological impact.

Yesterday was a good day, after the scan shopped, came home and did 2 hours gardening, cooked and then even went to my choir but about half time my voice completely disappeared and started to feel like a limp lettuce leaf. Haven't managed to do anything other than sleep today so still not got the hang of pacing myself.

Good news is still no AF but am having a few runs of tachycardia and palpitations when I am tired, they are too short to capture on Alivecor unfortunately. I have transferred to a local EP, who used to be the registrar of dr who performed my ablation, and I am due to see him in October because he works in the same hospital as my neuro so will be much easier to confer.

Very similar issues emerge on the Mg blogs as here, triggers, nutrition, exercise but add on weather as Mg sufferers are known as Snowfkakes because heat is a trigger for a flare up but so is extreme weather of any kind. That makes life a little difficult as my Darlin' man wants to go back to the Caribbean in the winter and skiing in France! "Do I go or do I stay?" seems to be my song of the moment,

Nutrition is a very similar issue as on here with some insisting they have eliminated all their symptoms through diet and others relying solely on meds. Magnesium supplements are the biggest contended issue, many neuros say absolutely no, whilst others say yes, very good for the memory. Mine is ok with me continuing if I think it's helping the heart, which I do,

Exercise is a different issue altogether because unless in remission, I know I will have a payback if I exercise at best, and a crisis at worst. Crisis=muscles just stop working altogether and i don't want to fall down in the street again, thankfully hasn't happened since I have been on the Pyrid. But I do get ridiculously tired and need 12 hours sleep + a nap in the afternoon, so to say it is life limiting is an understatement.

I have found a Mg Facebook forum which seems so much friendlier than the UK support forum, who frankly I found to be a weird lot who squabble and frighten people away with what I could only describe as bullying to anyone who doesn't say 'thank you' to each individual post. I have been told by several people they are not going to answer my questions because I said up front that although I really appreciate any response, I am not always going to reply to every person on a long thread.

Oh I love you guys, you are so normal!

The thing I am struggling with now is that I know I am beginning to become depressed and as a therapist, know what I should do, but just haven't the energy to do it. By strategy of playing the thankful game is wearing a bit thin as I sit home alone whilst hubby has gone sailing, my choice not to go, I felt too tired and too frightened of getting too hot in open boat on very sunny, sultry day here in Devon's south coast.

Have no questions and not expecting any replies, just helps to blog so if you did manage to stay with me, thanks for listening. Hope you guys are able to enjoy this wonderful sunshine, me I'll stay indoors and have a short walk this evening.

Best wishes everyone....

[dedeottie]

It sounds as though things are moving in the right direction treatment wise but oh my goodness what a lot of things to both come to terms with and deal with. We will all be rooting for you and very interested to hear how things progress. Lots of hugs coming your way.xxx

[BobD Volunteer]

Hi again and thanks for the heads up on your condition. It seems like things are moving a pace. Ditto weather on the North Devon Coast here. Just had three men making me feel tired attacking my very large hedges with chain saws and cutters so I can actually see across the valley now. Too hot to work myself and in any case it isn't long to wine o'clock. lol

Stay chilled

Bob

[Rellim296]

CDreamer, I think your plight helps us put into perspective how comparatively lucky those of us are who are dealing with lone AF. I know lots of people have more than one issue to deal with but I only have AF. It has had a huge impact of course and rules my life but I recognise the fact that I can deal with it by making a few sacrifices here and there and it's really not that big a deal.

The thing is that we are alive and good enough today and it is worth making the most of it because nothing is certain. Apparently my sister would never set the breakfast table because she thought it was presumptous to assume she would last the night!!

[Hidden]

CD, sorry to ask but what's Mg?

[CDreamer in reply to Hidden]

It's Myasthenia gravis, literally means muscle weakness. An autoimmune disease where your body attacks the neurotransmitters at the nerve/muscle junction so that the message from the brain doesn't get through which means your muscles don't work at all at worst or are very weak and unpredictable. My eyes are worst but affected my voice yesterday and is the cause of the breathlessness I was blaming on the AF and Bisoprolol and the reason my energies weren't coming back. It can affect any voluntary skeletal muscle including swallowing and breathing. Interestingly doesn't effect 'smooth muscles' eg bowel and bladder but the medication they invented does!

So the only muscle it doesn't effect is the heart, but then that is wonky anyway!

So just when I thought I was through the worst, I was hit with this, hence my moan.

[cat55]

My best wishes to you. Kath

[Hidden]

I love listening to you. Don't stop blogging please. I do have an interest though, our symptoms are similar CDreamer, although yours seem worse than mine. My hubby does not really have hobbies like like yours, he will go out to watch the odd football match. Plus we never have any money left any way as we still have two grown up sons to feed at home. So I feel blessed my house is always busy. Thinking about it our whole family rotates round the house as my daughters call often with there children. Having said all of this it's also hard for me to get respite as I a rarely on my own. We could do with sharing my family lol ! Does the MG charity have councillors to help like the MS society, just a thought. I wish you happiness today xx

[CDreamer in reply to Hidden]

Thank you for your lovely reply. I agree about the sharing of family, my house is just too quiet nowadays!

Even with 5 children between us and 11 grandchildren, we hardly ever get to see any of them. MS and Mg seem very similar but they lump Mg in with Muscular Dystrophy? I haven't found the Mg charity that helpful to be honest, nothing like the AFA and because it is a relatively rare condition, there are not that many sufferers in UK. I understand the figures are something like 1 in 10-12thousand per population whereas AF is something like 1 in 4 for +65? Someone like Beancounter is sure to know that one!

To be fair we both have similar hobbies and met through sailing so it is not just that he goes off, which I am delighted he does, but more I can't anymore! It will take time I know.

Our families currently live at least 200 miles away so it is difficult when children have all the activities they do these days to find time to travel. Before all this happened I used to visit mine frequently, but it is a long haul from Devon to north Lancashire and I just struggle with it nowadays. My youngest son and family are visiting next week end so no doubt their 4 year old and 18 month old will leave me pleasantly exhausted!

[Hidden]

Ah, you have a large family too. Enjoy your visitors xx I live in East Lancashire and my sister and hubby are visiting us from Southampton next week. We are all going on a bus holiday to Scotland, so looking forward x

[iris1205]

Oh, thanks for the update.... always wonder if I am "digging" for updates from folks who seek a bit of seclusion. It sounds as though you are managing as well as can be expected - you know as a therapist, we can't always do what we preach! You are very brave, feeling lucky to just have AF.

______________________

I just tried to send you a personal message but wasn't able to....??

If it is affordable, find an excellent physio who use the Pilates equipment. You are lying down and strength can be gained with little stress to the joints - much less than we impose when standing. It is important to not overtax the muscles/nerves so it is worth starting with someone knowledgeable and not "Fitness Pilates".

Keep us posted. Take good care