Hi everyone, I said I would post re my eyesight, well it's got a lot worse and finding it really difficult to cope so went to my optician on Friday who gave me an immediate referral to the regional eye clinic who got me an appointment today (only saw the optician on Friday so test was obviously not good). This clinic only see people with double vison. after about an hour of testing they more or less confirmed that it is probably Myasthenia gravis. This mean I cannot drive, any movement makes it worse so I have to have one eye covered if I walk and even then I am swaying from side to side. The clinic found that although I thought it was just in one eye, my left, both are affected and the right eye is actually far more unstable than the left.
Evidently anti arrhythmic drugs and beta blockers are known to worsen the condition. So feel between the devil and the deep blue sea. At present I have no other muscles affected but the rate it is going who knows?
Still not heard from the neurologist but the girl I saw today, who was a star, said she will write to neurology and chase them as the sooner I get treated the better. In some ways it is good to know what this is, on the other side this is a very unpredictable disease (nothing new there then!) which could be far more life limiting than AF. SHIT!
The other thing is that having visited the Mg forum, they are not the supportive, friendly bunch you guys are, in fact they seem to be rather the opposite as no one has replied or even acknowledged my post sent 3 days a ago. Please can I stay with you guys?
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CDreamer
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Yes please please do. So sorry to hear this news. I don't know anything about this so can only offer moral support. It sounds quite frightening as anything to do with your eyes must be. It sounds as though you are having good treatment though. Are you on antiarhythmic drugs? Life is often quite unfair.x
Sorry to hear that. Can I ask what drugs you are on? I had funny vision last year. I was sat opposite my wife and then suddenly there were two of her and one was going round and round. I couldn't feel a thing and I talked to my wife and told her what was happening whilst it was happening. It only went on for about 2 minutes or so. I can't remember what drugs I was on then, but it would be rhythm control.
Someone suggested it might be an ocular migraine but without any headache, I haven't a clue though!
Morning Koll, I am on Flecainide, which I know you can't tolerate. I really don't think it causes the condition but makes it worse. Your immune system creates antibodies which attack neuro-transmitters so messages don't get through to your muscles and they don't go where your brain tells them to, the results from yesterday indicated that my eyes are all over the place, very inconsistent. I think I have had this condition for some years but that the AF has masked it, I was thinking that as the heart is a muscle it wouldn't be out of the realms of possibility for the Mg to be a root cause of the AF?
My main indicator for this would be tiredness, especially later in the day, exercise intolerance resulting in muscle fatigue, develops quite quickly so never been able to build stamina. Mg improves with rest so exercise is not advised, am still doing my Pilates and swimming but more or less fall asleep for a couple of hours afterwards on a bad day. It's a bit like MS, can affect your whole body or stay limited to the eyes and it can go into spontaneous remission or get gradually worse.
I had thought I should have been feeling much more energetic by now but of course everyone here says it takes months to regain energies after ablation so just put it down to that whereas without the AF & meds I would have gone to GP earlier.
Just to reassure everyone here, this is a very rare condition 1 in 7-10,000 of population. You know me, got to read up on it, especially whilst I can.
This sounds most unwelcome news and we feel for you. It does sound as if you are getting competent and prompt attention and let's hope that the situation will be one that can be treated and kept under control. Do keep us up to date. All good wishes.
Hi CDreamer - I'm sorry to hear your news and hope you get to see the neurologist soon. You are part of our AF family so of course you can stay. As Beancounter says , we demand it. X
Please stay . As others have said, we demand it!. I am so sorry to read of your problems which only go to show that there are worst things than AF and we all tend to get wrapped up in our own problems a lot of the time and forget that. I really hope that you get some good treatment very soon and hope to read about it here.Group Hug. (((((((((((((-)))))))))))))).
Bob
Just thinking the same as Rosy. Can you go without Flecainide for a while, see what happens, or reduce the dose, or try something else altogether?
Koll
Hi CDreamer.....I am new here and this is my first post.....I have found the folk here to be incredibly supportive and clearly you have too!! Of course we want you to get the medical help you need so don't think about leaving us!!!
Of course! Of course! What a horrible thing... Sending big hugs, and hoping that they find some way to stabilise this. I don't know anything about it either but it is such a terrible shame... You take care of yourself!
Nursed patients with mg more years ago than I car to remember but do not remember it affecting their heart muscle. Will look it up for you and post back
So sorry to hear this. I've no personal experience of MG, except that my aunt had it. I think it affected her mobility but not her eyesight.
Re conflicting medications - wouldn't you just love to lock all of the doctors involved in a room and not let them out until they came up with a plan?!
Sorry to hear this. Sounds awful but hopefully you will find a solution.
Just a thought -when I had my ablation in November I was taken off all meds the next day (except warfarin) and taken nothing since. If you think meds are contributing to this condition perhaps you could as ep asbout stopping meds??
Just wanted to add my good wishes and hope the docs sort out a plan for you. And I have the nerve to moan about all my floaters and dry eyes - never again.
So sorry to learn about your mg/eye problems. Sending you love with fervent hope that things will get better very soon. x
Just read your post CDreamer, how absolutely awful for you. Hope you get to see your neurologist really soon & that things will not be so bad as you fear.
Very sorry to hear about your problems. A friend of my daughter was diagnosed at a very young age (14) after a long time and just by chance as the consultant had been to a conference the week before & her mother just happened to mention that she could no longer whistle! She was told that she would never be able to have a child probably due to all the medication she had to take, at the age of almost 40 she had a lovely baby boy after a very difficult pregnancy and with lots of medical care. She has always been determined to live a normal life despite having crises where she threatened to throw all her tablets away, she is a lovely young woman who has always worked. Unfortunately myasthenia gravis affects all muscles which of course includes the heart. All the best. Pauline
Please do not despair, as I said in my last post my husband had exactly the same symptoms. Once diagnosed they had his vision back to normal very quickly. The drug therapy is very heavy but very successful. Eight years down the line his drugs have been drastically reduced and he is playing squash 3 times a week. You need to get to see your neurologist so you know exactly what is going on as this is only diagnosed by a blood test that takes about 3 weeks so maybe your GP could get this in motion as the culture has to grow. All the best.
Thanks, I understand that the blood test is only conclusive in about 60% of people so they diagnosis on symptoms. I guess I will have to be patient as I don't think the appointment will come through before the blood tests, which I had 2 weeks ago,
Results are in. I am feeling a bit more philosophical today, trying to play the Polyanna 'thankful' game! Thanks for your support it really helps knowing there is hope.
Don't you even think of leaving this site. I have so valued your wise and reasoned posts, since I joined. Just couldn't do without you. I'm crossing everything for you.
Many, many thanks for all your wonderful support which has really lifted me!
I have reduced my meds, saw my GP who recommended halving the dose of Flec, which I have done, monitor apeffects and then the Biso (which I halved last week.) No ill effects re the AF since doing so. Hopefully I will stop them next week after I have an appointment with my EP in London.
Interestingly I lost the ability to whistle about 20 years ago. I wasn't asked that question, just if my voice faded. Where there is breath there is life so onwards and upwards and thanks again everyone who replied to me.... Love you all xx
Thanks, my understanding is that it effects any voluntary muscles not the automatic functioning so thinking about it I think you are probably correct, but things seem to change all the time so I will keep asking. Thank you for taking the trouble to look it up. best wishes.
Hi only just seen this and other posts because my notifications stopped...I have noticed recently that my close sight has suddenly got worse since I've been on Flecanide my eyes have definitely been affected by this drug and I'm taking as little of it as I can get away with I've had to go slightly stronger in my reading glasses from. + 2.50 to 3.00.
No, we have a very converluted system called DART where medical secretaries aren't involved, external company send you a letter, received Thurs, asking you to call them so they can tell you what appointments are available in which centres so at least you can have a conversation about who, when & where the appointment will be.
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Feeling very low
