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

Hi Op

Not sure if I will be totally helpful, but my dad was diagnosed with myasthenia last year, with the eye droop being one of his first presenting symptoms.

The diagnosis only came after other symptoms showed up and I had to take to Dr Google to convince him to see a neurologist asap though

Hi,
My son had ptosis quite a few years ago. They sent off some specialist blood test which took around 6 months which came back negative. They said this wasn’t conclusive though as can be undetected. The ptosis resolved and when seeing an ophthalmologist for red eyes, it turned out his ptosis was due to scar damage on his eyelid from chalazions. It was a worrying time though. Hope it all works out well for you. Xx

I have very mild ptosis. It’s a bit of a family trait (have always had it, as do one brother, one sister and my nephews (brother’s kids) and my DD). My DD and I were tested for myasthenia gravis as she has a neurogenic condition but we don’t have MA. Not sure that helps at all.

I have been referred on basis of the ptosis, it's quite prominent. I'm quite worried as my job involves lots of reading so I need my eyesight. But I am also worried about a bit of lip weakness and leg weakness on same side as my ptosis.

Also worried if it gets bad and I can't drive the children to school and hobbies (I can at least work from home!)

And equally hoping for lots of stories about how it was a false alarm of course.

My ptosis has only developed it last year or so. It is quite bad now and partly covers my pupil.

Weakness in leg and lip I have only noticed in the last week or so, trying to convince myself it is just my imagination!

Isn't myasthenia gravis much more treatable now?

@WhoWants2Know I hope so! I am finding it hard to find clear information. I knew nothing about it's existence till recently. Plus it's a long wait even for first neurology appointment (and that's going privately)

Yes to both feel free to PM me if you want. I’ve had it a long time so I’m pretty knowledgeable about it.

Are you getting double vision? Are you having any problems with chewing or swallowing?

No double vision at the moment.and no difficulty chewing.
But a slight droop in my lips on one side.
Dealing with small people at the moment but might message later on if that's ok, thank you

I have Ptosis and was investigated for MG but test came back negative. I have other AI conditions too. Mine is worse when I’m tired etc and comes and goes. Think it may have been caused by trauma to my neck many years ago, as I remember having loss of vision in one eye back then too.

I read a lot about MG and scared myself silly while waiting for tests and results, so try to keep calm until you know what you’re dealing with.

@RoyKentsChestHair yes I have other auto immune conditions too (sjogrens and hypothyroid) and I think that's why I am feeling pessimistic so your story has encouraged me

@VeeringTowardsMuff1ns am trying to work out how to pm you but can't figure it out . Would love any advice or just what to expect at first neurologist appointment

I have dr referral letter now and it says ptosis in both eyes, one quite prominent. Am also a bit shocked that the neurologist was passed it and asked to see me quite urgently so am seeing him in next couple of weeks ( privately due to nhs delays ). His normal wait time even privately is 12 weeks, so not sure if I should panic or be glad that he wants to see me much sooner

Have realised my speech does slur when I talk a lot. Like my speech muscles get tired. And I get double vision at the end of the day I just had got so used to it I thought it was normal! I had to ask DH for help because the paperwork was swimming in front of me

What to expect? It’s a long time since I had my MG diagnosed but they’ll definitely look at your eye movements and test your muscle strength by getting you to push and pull against them and maybe do a grip test. Blood test would look for antibodies - but it is possible to have MG and no detectable antibodies or very low levels. There’s also an electrical test they can do of your muscles (I had it done in my arm) and it shows if they neurotransmitters are working properly - it doesn’t hurt but the electrical pulses do feel quite odd. They might do a scan of your thymus gland, which is in your chest, to see if that’s enlarged.

In terms of treatment they often start with something called Mestinon (pyridostigmine) which is most useful for mild myasthenia but I found lost it’s effectiveness after a while. The next step is usually immunosuppressants which I’ve taken for a long time and been alright with but they do scare people because of side effects - but without them my quality of life would be so much worse so in terms of cost/benefit it’s a no brainier really I just try to keep my dosage as low as possible. At the moment my MG is very well controlled and I’m fit and active - currently taking 150mg daily of azathioprine which I’m going to be reducing to 125mg next time I get a new prescription and then 100mg if that goes ok. (If you do have MG then you get free prescriptions btw.)

It might also be worth having your thyroid checked as issues with your thyroid can be immune related and are more common in MG than in the general population.

(I’ve also had an MRI brain scan in the past too to rule out any other issue - this was because my antibody test was negative - but that wasn’t part of the diagnosis.)

I wasn’t happy with the treatment I had in my local hospital and got a referral to the MG centre in Oxford and I would always recommend this to people with MG as they really are excellent. It’s a long journey as I don’t live anywhere near Oxford but is well worth it. Can I be nosey and ask who it is you’re seeing?

Be glad your appointment is sooner rather than later - I was diagnosed within a week of going to see my GP but from other people’s stories I’m aware it can take a shockingly long time. I was at secondary school at the time so was very young to get MG. They thought my symptoms could be due to a brain tumour and actually said they were quite pleased it was MG (I did get what they meant but it was still a very annoying thing to say!).

Yes doctors sometimes have a way of being quite blunt in what they say! It must have been tough being diagnosed as a teenager.

I have hypothyroid already so it's interesting about the link.

I'm seeing Dr Pinto - south coast based. But it's interesting about the Oxford centre as that's not too bad to get to for me.

Do you have slurred speech? Mine slurs a little if I talk a lot and I am worried about it getting worse as I have a very prominent professional role with quite a bit of public speaking.

It started as ocular only and then became more generalised and affected my speech and general strength. When I got my medication right and got it under control I’ve not had any issues with slurred speech and have always worked in roles that involve a lot of talking!

Oh that's a huge relief that the medication sorted your speech, I love my job, but I need my speech and vision to be clear to do it.

Just resurrecting this because I have had a couple if bad moments recently and could do with a moan/reassurance!

First one was sightseeing with DH, we were strolling round a city and I felt tired so we were looking for a cafe and I could just feel my eyelids drop and throat go to the point DH had to just guide me to a chair and I couldn't really talk. I felt better after an hour and was able to get back to the hotel and after a few hours rest I felt ok again

And then yesterday I totally over did it helping out with my son's hobby, rushing around sorting things and raising my voice to make sure the children could hear the instructions etc. I knew I was pushing through feeling dreadful and I think a bit of me thinks maybe I am just being a wimp so I kept pushing. I got home and dd wanted a story so I read to her even though my voice was shot then finally sat down to rest. I nodded off and then woke really suddenly and it was just really scary I felt like I was drowning from saliva/stomach acid or something, horrible scary coughing, and I couldn't talk to explain to DH. He was fab and sat with me.

My guess is this could be the myasthenia affecting my throat. I know the solution is to rest more and not push myself, but it's quite hard explaining to people when I look well.
And are there any things I can do if I get that horrible drowning sensation again/or to prevent it if I get over tired?

How long have you got to wait until your appointment? I’d recommend in the meantime talking to your GP as they might want to get in touch with neurology to move things on. Take it as easy as you can, rest is the only way the best way to manage it.

Just thinking about your consultant’s appointment and thinking it would be worth contacting their secretary directly as they might want to move your appointment forward.

And if you ever feel like you’re struggling to breathe ring for an ambulance as it’s better to be cautious.

There’s an MG charity you might want to try contacting (including a FB group, although I’m not on it any more as they went a bit crazy with COVID and I found it better to avoid). I’ll pop details on here later.

(I’ve name changed but was previously VTM).

www.myaware.org

Hi @NotLeavingWithoutTheSpringRolls have applied to myaware to join the Facebook groups etc but wasn't sure they would let me without formal diagnosis. But thank you, and it's a good warning about covid. I can only imagine! I had to avoid half the internet anyway to stay sane

Neurologist is in a week and a half and with needing to sort childcare etc I am not sure I would manage to go any sooner anyway.

My sister told me and DH off for not calling an ambulance though. I will make sure we err on the side of caution if it happens again, although I shall also try not to wear myself out. It's horrible resting though as I like to be really active and I am struggling to think of restful things to do with two manic children.

@NotLeavingWithoutTheSpringRolls thank you for your advice before. With hindsight you were right I should have brought the appointment forward - I got to the point I wasn't really able to swallow drinks by the time I saw the neurologist. My blood tests are negative but based on physical examination (neck/arm/facial weakness and fatiguing ptosis) he is pretty certain I have generalised MG and has prescribed pyridostigmine.... I have started taking it and feel better within 30 mins although am building up

A couple of questions, if you don't mind me badgering you more? Do you know of any other chat groups other than the myaware FB one? Have gone on there a bit but it's not hugely active and I feel like it's not somewhere I would necessarily feel comfortable asking loads of questions.

I think it’s pretty definitive if you have a positive response to the pyridostigmine - my antibody results were always either negative or very low. I’m afraid I’m not aware of any chat groups - I left the Myaware one (the secret one that you only get access to if you’re a member) which I joined because I wanted to find out as much as I could about MG and COVID, because the overall vibe was too negative and I think I pissed them off with my more optimistic POV (seriously!). There is probably a US based one that would be more active - I’ll have a look

I once tried to ask on here if there were any MNers with MG but didn’t get much of a response.

I’ll PM you in any case with my contact details if you wanted to chat directly rather than on here.

In terms of groups on Facebook - the biggest and most active is just called Myasthenia Gravis and has a picture of a snowflake as it’s group pic. I’d start with that and there’s also a women with MG group that is less active but probably worth a look.