Does anyone have ptosis and /or myasthenia gravis?

[SweetSakura]

Hi, just wondering if anyone has any experience of ptosis and being investigated for myasthenia gravis. Am waiting to see neurologist and just wanting to chat to get my head round it all really

Thank you!!

Yes I think I felt quite a big emotional response this weekend because the detail in the neurologist letter combined with the rapid change when I took pyridostigmine really confirmed it for me. A bit of relief after being ill for a while and a lot of emotion about the future.

I guess it shows how rare it is that so few mumsnetters respond! But that makes it feel a bit lonely because I love the wisdom of Mumsnet at its best (and am so grateful to you for replying!)

I will check out those groups, I like the idea of a women with MG one especially

Update ( in case anyone Googles even later down the line and finds this helpful)

I saw the neurologist who was fairly sure it was myasthenia and because of swallowing issues allowed me to start the medication (pyridostigmine) straight away - rapid improvement.

I've also had the single fibre test and that confirmed generalised MG diagnosis.

I feel so relieved that after years of fatigue there is an answer and it is treatable.

I have also realized that alongside the ptosis there were some other pointers (that I had just got used to over time) that this was myasthenia gravis - I could barely hold my head up at times, propping it up with my hand when sitting , and spending most of the evening lying down. And when I got over tired I would feel a tugging pain in my throat and my voice would go soft. Also I had clearly been ignoring my speech slurring when with hindsight there were numerous possible causes a GP would have wanted to investigate

I feel really grateful to my optician for spotting the ptosis! Looking back at photos I had had it for quite a few years

My DD has had myasthenia since the age of about four. Her first symptom was an eye squint so we had regular appointments with the eye specialist at the hospital. Not knowing it was the start of the condition, she was operated on for the squint. At one of her follow up appointments, I mentioned to the doctor that she seemed to have a weakness in her face as her lips felt almost spongy when she kissed me and she couldn't use her blow pens without physically holding her lips to blow. He was quite concerned, thinking she had a possible brain tumour and urgently referred her to a paediatrician. She had a brain scan which thankfully was normal and was then referred to Great Ormond St hospital. She was then about five and a half. After many tests she was finally diagnosed with MG. Hers is a very rare form of the condition and the hardest to treat.
As she was so young, she has learned to live with the condition, and tries to not let it affect her life too much. She's now almost 29.
She has had many different drugs including IVIG a few times. She was in remission a few years back and completely off all meds for a good 2 years. Then relapsed.
In 2019 she was approved for Rituximab which if effective, can last from 6 months to 2 years. For her, it was a good 3 years before she again relapsed. She's currently waiting to be admitted for the treatment again.
As she is at the moment, she's unable to work or do anything which involves anything physical.
Basically her life so far has been a rollercoaster but she never lets it get her down and strives to do all she can within her capabilities.

It must have been a horribly worrying time waiting to find out the cause @Ivebeenframed

I have a very rare hard to treat version too and at the moment my life is very limited, I am trying to stay positive but it is hard when I love to be on the go and active.

My solace is getting lost in books!

And I am lucky to have a job that is very sedentary. The hardest is when my speech goes, as my job does involve a lot of talking

@SweetSakura
Are you in the UK and what meds are you taking?

@Ivebeenframed yes in the UK. Pyridostigmine, prednisolone and mycophenolate at the moment

@SweetSakura

Pyridostigmine had no effect on DD and her consultant was reluctant to try Mycophenolate as she's at childbearing age. Since her last relapse, she was recommenced on Azathioprine and Prednisone which worked well for her when she was younger but hasn't had any effect this time round.
She should be getting the Rituximab anytime soon. Approval for that wasn't easy or straightforward. She had to be referred to a professor at the neurological hospital in Queens Sq London and meet the criteria for the treatment. It's all done on a scoring system now, lots of questions about what you can and can't do with each answer scoring "points" It's very expensive.
She's in quite a few MG social media groups and this treatment isn't approved in the states so isn't covered by medical insurance. One woman was quoted $100,000 dollars to have it, needless to say she couldn't afford it.

It's horrifying the baffles people face in the US. I have found it really sobering to be in the social media groups for people with myasthenia.

I have completed my family and know mycophenolate can take a long time to work and that I need to be patient. Prednisolone really doesn't seem to have made any difference at all. It's encouraging that there are other lines of treatment to try , but I am struggling with the thought of a whole summer waiting to see if mycophenolate does the trick! My children are at a lovely age and very active and it's hard sitting on the sidelines

I hope she gets her rituximab approval soon

I have seen eye doctor who had ordered a blood test for MG . My main symptom is a droopy left eye that I have to sometimes push open particularly when tired. Now after googling I am now wondering if waking up with saliva dribbling and also sometimes coughing is a symptom?
I really struggle with keeping my eyes wide open and always look as if I am squinting. Also pins and needles in both hand when lying down in bed…sometimes it wakes me up and lack of strength in my fingers .
Didnt mention these symptoms because I wasn’t asked .
Any thoughts please,X

The saliva thing can be - I choke /cough on my saliva if symptoms are flaring

Other common symptoms are slurred speech (especially after talking a lot)/double vision (I don't have this) / muscles that feel weak after exercise...

Thank you for your reply..the saliva problem has been a fairly recent problem. How long did your blood results take ? X

Hi yes, dd got approved for the Rituximab and had it about 6 weeks ago. She hasn't seen much of an improvement as of yet, not sure if the hot weather has anything to do with that as heat seems to make the condition worse.
We're living in hope that she starts to show signs of improvement soon.

@Wellgoodforyou I can't remember now how long the bloods took but all my bloods have been negative. That's true for aboutn20% of people with myasthenia I think. I was lucky GP knew to still refer me to neurology because of my symptoms, and I tested positive when they did the single fibre EMG test

@Nutterjacks yes I am really struggling with the heat too!

My Mum has Myasthenia, she was diagnosed in her 40, now 70, and it has never progressed beyond her eye.

It is a fairly rare and unknown condition which can be scary. She's had experienced medics say they have never met someone with Myasthenia before. But you are being investigated that is the important thing as early treatment gives better results.

At the moment you can barely see which of my Mum's eyes is the bad one, but she has had flare ups from time to time, often due to medication changes and her other medical issues.

I often come on to Mumsnet to see if this subject comes up.
I was diagnosed with ocular myasthenia about two years ago . And it wasn't an easy process ...optician , eye clinic at two hospitals ...finally at a stroke clinic it was diagnosed . But one thing I've found is the pyridostigamine isn't really working now . I've had abit of a flare with my eye ...it's dropped most of the time now even with taking the medicine every 4 hours and I'm on the maximum I can take . I can't seem to get hold of the neurologist, so I've had an apt at the eye clinic in the hospital and she's managed to email him . But I'm now getting arm symptoms . Also have issues with holding my head up , tend to have a pillow behind my head on the sofa ...so when I see him next I shall mention it all . Out of Curiosity how old are the ladies here that have it ? I'm 38 . Seems to affect ladies under 40 .

I'm 42 but I think I first started getting symptoms at about 35 if not sooner

Yes struggling to hold my head up is a big issue

Hi, I’m hoping this thread is live and that you don’t mind me replying.
I’m 32 and for the past year have been experiencing many symptoms of myasthenia gravis, it was actually whilst I was pregnant with my 2nd son and symptoms gradually got worse (trouble swallowing, chewing, smiling and general facial weakness) I’d have times through the year where symptoms would go away for no reason and then eventually return, throughout this time I’ve been told I have hypothyroidism, which I didn’t realise is a link to MG! I haven’t been diagnosed but I have tested positive to the antibody and with the symptoms I’ve sortve put two and two together, however I’ve already seen one neurologist who was certain the blood test showing the antibody was a red herring 🤷🏽‍♀️ fast forward a good 6/7 months and I’ve now gone private to hopefully get to the bottom of it all! Im so scared to get the possible diagnosis, you all seem fairly positive but I just can’t help but feel devastated I have two young sons and I wasn’t really finished having babies, I would love another but I’m scared that has been taken away from me aswell? Am I overreacting? I’ve of course googled this numerous times and it says people can have normal pregnancies etc but I guess I’m just scared of what the future will hold and no one else in my family understands my struggles so I guess I’m just looking for some reassurance. Sorry for the long message 🙂

Definitely fine to post and sorry about my half awake reply.

I am surprised you were told positive bloods were a red herring. I have negative bloods and still have a diagnosis based on symptoms and single fibre EMG test (hopefully private neurologist will refer you for that)
Have you found Myaware yet? They also have a Facebook group and lots of people on it are still waiting diagnosis. You have to be a member of myaware to join the group but I find it helpful, not least because it is moderated. And myaware is free to join and you don't have to have a diagnosis . They have a helpline too

Plenty of people have still managed to have pregnancies with MG. If you join the Facebook group there will be people who can share their experiences

Don't feel devastated but equally I understand your worries and your frustration at people not getting it.

Happy to chat more, I know it's a lot to process . And the chewing and swallowing issues aren't fun.

Hi, thank you for creating this thread. I’ve got suspected MG (waiting for results of the tests from neurologist). How are you finding life now?

I have a very lively 1y/o and was hoping to have more children, which may no longer be something that I think is wise. My eye went very weak only 1 week ago so I’m very lucky to be seen so quick although I’ve always been very anxious about health related issues so always act fast. Have felt very tired for months though, which I put down to being a mum of a toddler. I also have a weakness feeling in my leg but not sure if I’m overthinking it.

I am scared about not being able to pick her up out of the bath / drive / run around after her. I’m also scared about steroid side effects if that is the route of treatment I need.

What benefit would a thymectomy have?

Does diet / lifestyle make a big impact to how much it flares up?

Once I receive a diagnosis I’ll look into the FB groups.

Also sorry to bombard with questions. Thinking aloud and panic typing I guess.

@Justaworriedmum come join the Facebook groups now! There is Myasthenia Gravis UK and also the myaware one. To join the myaware one you need to join myaware but it's free to join and their Facebook group is moderated carefully so any silly advice is squashed
There are always lots of people on there waiting for diagnosis, it's probably the time people most need support

I haven't had a thymectomy but there will be people on the groups who can answer that.

Steroids didn't agree with me at all but they are a wonder drug for others

I know there are people who have managed pregnancy with MG. I don't think it's necessarily ruled out at all, but definitely let your neurologist know as there are some drugs that aren't suitable if you are hoping to have more children

I have found the book. "Some spoons are worth spending" very helpful. It was written by a physiotherapist who has MG (and is a mum). She also had a Facebook page - the Myasthenic PT I think it is called