So it looks like I have come down with myasthenia gravis, a neuromuscular condition, possibly induced by diltiazem.
My question is about next steps. Anyone with stories of corticosteroid, emg or ivig? Thanks so much.
Just FYI it is difficult to type now so please excuse brevity
My afib is controlled by daily grounding, no episodes for almost a year.aa
How are you grounding yourself Cabot?
The simple way! 15 minutes of my bare feet on the grass per day. I tried products but reacted negatively, unfortunately
Do you live in the UK or somewhere with more winter sunshine?
I live in the States, but not in the sunny climes. It looks ridiculous to ground in snow but I do it!
You're good to keep grounding when it's cold.
Of course I realize I am more bluster talk than action as today we are having a wintry mix and I won't be grounding! What I meant was when the snow is neatly on the ground and the sky blue again then I will find a way to put my feet on the ground!
So sorry you have this, it's horrid..I don't have any helpful information
This link will take you to all posts on Health Unlocked re myasthenia+gravis:
healthunlocked.com/search/p...
I believe that a member of this forum CDreamer may have this and will be a mine of knowledge as she is much respected for her knowledge on this forum. Now I've highlighted her name she will see that I have mentioned her and will hopefully respond to you.
Jean
Thank you!
Hi - yes I have Myasthenia gravis, diagnosed in 2014 following treatments for AF which exacerbated the condition.
I was lucky in that I had a neurologist who worked with my cardiologist and the treatment plan excluded using cortosteroids, beta blockers, Antiarrhythmia drugs. I have taken Mycophenolate as a steroid sparing drug + Pyridostigamine for symptom control. It took 6 months for drugs to start to have any affect and 3 years to stabilise. I am now medically in remission so reducing my drugs as I have had a lot of infections for which I was referred to Infectious diseases and am now taking prophylactic anti-viral meds for six months, which have been a godsend.
Steroids will stabilise you quickly but when I was diagnosed my neurologist insisted that anyone starting should be hospitalised, I guess that has now changed. At the time my heart was also very unstable and my cardiologist was very against me using steroids.
I was diagnosed on serum antibodies - very high count 100+ and symptoms so I did not need emg. Thankfully I have never needed IVG and I understand from the Myasthenia FB page it is now quite difficult to obtain.
If you haven’t already been directed to the Myaware - here is the link - good info and ESPECIALLY - drugs to avoid! myaware.org
The HU Myasthenia forum is not really active but you will find the FB page of Myaware quite good but the best and most informative is Myasthenia UK on FB which is a private group with about 3,000 members. Bright people, many younger women who keep up to date and not afraid to share.
Like AF, snowflakes are unique in how their Mg plays out but managing Mg + AF has, I will not lie, been very challenging at times.
I have collected a lot of info on Mg over the years - there are some really promising vaccines and treatments coming on line but I would stress that many of the AF drugs WILL exacerbate your symptoms so please do take very good care of yourself and ensure you carry Myaware advice cards for ALL your doctors, GPs tend to know very little about it, cardiologists, surgeons can be overly sensitive, the one speciality that seems to know most are anaesthetists in my experience.
My understanding is that Mg is now becoming more common but by seeing the right specialist for you, also always is much better controlled.
Please feel free to PM me if you would like to ask questions.
Very best wishes
Although not on the Myaware list - statins are known to cause and exacerbate Mg so another drug to avoid.
Thank you so very much! I'll try to figure out how to PM...
Hi
I've been on Diltiazem since December 2021. 120mg CD AM. No side effects.
Statins will do it.
Steriods interfere with thyroid.
Cheri JOY. 75. (NZ)
Thank you!
My partner has occular myasthenia gravis and sometimes has a flare up which gives him double vision. He has to be treated with steroids gradually tapering. He is in the middle of treatment at the moment and started on 15mg prednisolone daily now down to 5 mg tapering 1mg per month. Not nice treatment but necessary
So helpful, thank you
Our friend's daughter developed this in her early late 20s, but it is now - maybe ten years later - almost a thing of the past. I think you will find that the steroids will control the symptoms work and can eventually be tapered off, as needs to be with these drugs as they suppress your natural steroid production and stopping too quickly can bring on bad side effects.
Steve
I so appreciate this story, so helpful. Thank you
I have to say that we were pleased and surprised as, you can imagine, at her age and so very active, and even the sound of the illness instils fear; but, it seems - at least often - it is one of the many auto-immune illnesses that do, eventually, succumb to steroids and burn themselves out. My wife has had a similar brush with one or two scares in her lifetime and both have left her pretty much unscathed.
Let's hope that's the case for you. I strongly suspect so,
Steve
And therein lies my question! Steroids are very much discouraged here for Afib, but they are pointed to by these other conditions...
Thank you for your thoughtful reply
It’s been a while since I looked but I think there’s evidence both ways for steroids in AF.
Steve
Great to know. I thought it was settled science that steroids weren't on the possible list for people with Afib
Well - you've sent me off reading; and it's far from clear. Steroids seem fine with AF, but seem able to initiate AF in people who don't have it yet. There are online reports that steroids cannot be given with MG, yet others which show them to be a second line treatment after pyridostigmine.
Oh well!
Steve
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Looking for feedback regarding Asymptomatic Afib
