Myasthenia

[TheFirstMrsDV]

Hi.
I have just been diagnosed with myasthenia gravis after nearly a year of double vision and difficulty swallowing. Its been horrible. Iost 10kg and nearly my job.
I spoke to my GP surgery four times, went to A&E once and saw two opticians before going to EYE A&E in desperation where the ophthalmologist suggested it within five minutes.

Are there any other MNers out there with MG?

No personal experience to offer but wanted to say good to see you!
Often think of you and your lovely girl, so sorry you’re going through this health rubbish.

Thanks Juno.
Yeah, its rubbish. My DH has had even worse. We are a couple of disasters at the moment.

Ah that’s rough, how is he at the moment?

I’d feel a right tool telling you about eating little and often, what you want, when you want etc etc.
I know you could write a book on trying to gain/maintain weight in illness.

Are you happy with your Neuro? Is there a CNS who can support you?

@junowiththegladrags
He is ok but I am a bit worried about his pain at the moment. He assures me its muscular but I can't help but fret.
My neuro seems nice enough. There is a neuro nurse locally so I am going to self refer because specialist nurses are usually better at going through things.
I have managed to put on a bit of weight with breakfast shakes and some yogurts I found in Sainsburys! So I am not rocking the crack addict look anymore tho I could do with a couple of more kgs.

I don’t have it - but was investigated for it earlier this year.
This might be helpful www.myaware.org/

Thank you
Did they find out what you had?

No. Symptoms were nowhere near as severe as yours though so I’m just getting on with things.

I have it and have done since I was 26 and I'm now 52 - so apparently half my life! My symptoms started when I was heavily pregnant and they were text book - dropping eye lids, slurred speak, legs giving way, weak arms, double vision etc. I was initially put on pyridostigmine and stayed on that for about 8 years. I didn't want to go on steroids until I'd had my family although was told they weren't a problem in pregnancy. Pyridostigmine helped but I wasn't without symptoms- some double vision and some weakness. I was then put on 70 mg of prednisolone and 100 mg azathioprine. The idea was that the prednisone works quickly but the azathioprine doesn't. Therefore, the high dose of prednisone gets rid of the symptoms and then the prednisone gets reduced and the azathioprine takes over. This worked and I was eventually taken off the azathioprine and now on 5mg prednisone a day with no symptoms. When I was diagnosed my neurologist said that if I had to choose a neurological condition, this was the best one to have because they can treat it. He turned out to be right! There are some Facebook groups for myasthenics but I've found that it only attracts the minority whose life is affected as opposed to the majority whose life isn't!

Thank you so much @honkytonkheroe
I know I am lucky to get it later (I am now around your age).
I felt relief when I was diagnosed. I suspected it right at the beginning when my eyes started shutting. I told myself I was being daft (I have PTSD which is health related) and convinced myself the double vision and swallow was severe hayfever. I couldn't see a doctor and they just fobbed me off. Two opticians failed to mention it so it was easy to bury my head even though I DID try and get it seen too.

Finally got myself to Eye A&E because I had no functional eyesight and couldn't take water without spluttering. Ophthalmologist provisionally diagnosed me.
By that point I thought I had a brain tumour so I cried with relief.

I am hoping I will have a relatively smooth ride but not counting my chickens.

I went into it completely blindly and unconcerned. Even when my dr sent me to the neurologist I wasn’t concerned and with hindsight that was so naive as I could have been diagnosed with anything! However, when I was diagnosed I was completely reassured that they would overcome the symptoms. I can honestly say it hasn’t in anyway had a negative impact on my life. I forgot to mention that I had a thymectomy about 18 months after diagnosis. I think this worked to some extent but it took the steroids to really alleviate symptoms. My consultant is Dr Leite at The John Radcliffe in Oxford. Do you know yours? My advice is not to worry and have faith in the professionals and all will come good!

@honkytonkheroe you are really kind to reassure me. Thank you.
I am having an MRI to check thymus. Nothing was on my xray.
Mr Neuro is Dr Ingles at Barts. He seems nice. He is Central Casting Neuro consult. Posh, ebullient, quite brusque.

I would like to talk to a specialist nurse but it seems like our local neuro nurse is more for the serious conditions like Parkinsons etc.

Thank you again. I really appreciate it.

@alongtimeagoandfaraway I hope you get some answers soon. Or your symptoms go away. Take care.

Strangely my thymus was removed “just in case” it would make it better and nothing was found. At the time, they said that various parts in the body possibly made the antibodies including bone marrow and since they all couldn’t be removed and it was highly likely that the thymus was contributing significantly, they thought it was worth removing it. It was a lot of years ago though and they’ve probably changed their mind completely! Brusque is par for the course I think!

I was surprised when he said it was a possibility because I read they don't bother with people my age. He said they do it endoscopically now so thats an improvement!
Not sure its something I would go for while I am relatively symptom free. I will find out more in January.

I guessed it now wasn’t the big op it was when I had it! Try not to worry about it over Christmas. It really isn’t a terrible diagnosis. Let us know how you get on. x

How are you getting on?

I am just being tested for this at the moment. I’m 32 with a 1 year old so am quite scared.