More problems

[Berylholley]

Besides having several autoimmune disorders I now seem to have myasthenia gravis. 1 droopy eye that closes when I read. Muscle weakness, my latest one is at the back of my left lung, moving up and down when I get up, I hold my breath and make it a lot worse. Don't know what to do. Don't want to tell my doctor. Shall I see if it gets better?

[PMRpro Ambassador]

Don't be so daft - tell your doctor about the new symptoms. MG is also an autoimmune disorder by the way. And as my mum would have said - don't hold your breath then...

[Berylholley in reply to PMRpro]

Thanks but she won't believe me.

[PMRpro Ambassador in reply to Berylholley]

Then speak to someone else - the droopy eye is also a potential sign of a TIA/stroke so I hope she would take notice.

[Berylholley in reply to PMRpro]

When I went to see the eye specialist at Good Hope Hospital he had a young doctor with him and said to him "ptosis" as he lifted my eyelid up. He has referred me for cataracts and asked me if I wanted my eyelids done so I said yes. I might see if I can contact him.

[piglette in reply to Berylholley]

Droopy eye due to muscle weakness and also double vision are symptoms of MG. In fact weak muscles generally can be a problem. MG is difficult to diagnose but hopefully you can find someone to find out what the problem is. It could be ptosis which is droopy eye!

[Berylholley in reply to piglette]

Hi piglette I googled it and read that to help diagnose MG they hold an ice pack to the eye for 2 minutes and if it improves it is. I tried it and it went much better. Is this good?

[PMRpro Ambassador in reply to Berylholley]

Means it is less likely to be other things. And MG can be managed pretty well these days,

[Constance13 in reply to PMRpro]

I’m useless at all these abbreviations. Can you please tell me what TIA/stroke is - also MG.

Frightend the life out of me because I have had a droopy left eye for months, OH is always telling me to open my eye.

[PMRpro Ambassador in reply to Constance13]

TIA is transient ischaemic attack - a mini stroke. If it has been like it for months it isn't one of them - they resolve in 24 hours by definition.

MG is myaesrhenia gravis, which has been spoken about a few times today

[Berylholley in reply to PMRpro]

I have had the droopy eyes for some time so that's good.

[piglette in reply to Berylholley]

When are you seeing someone again about it? Can you contact your young doctor? Interestingly enough pred works pretty well for MG too.

[Berylholley in reply to piglette]

I'm going to stay with it for the moment. The young doctor was getting experience from the consultant who was examining me.

[SheffieldJane in reply to Berylholley]

I would certainly take them up on the eyelid lift. We can be the desperate housewives of PMR.

[Berylholley in reply to SheffieldJane]

Yes haha I'm going for it. When he asked me I told him I had asked the doctor and she said no, so he said I could have it done after the cataracts.

[SheffieldJane]

Sounds like you’ve got yourself into a bit of a tizzy. We do go through spells of weird symptoms and anxiety, looking up symptoms on the internet and imagining that we have the worst case scenario. I avoid going to the GP because I feel that my credibility will be shot. If you honestly believe that your eye is closing through more than eyestrain and fatigue, then you must get some medical advice. Let us know what happens and try to be calm.

[Rimmy in reply to SheffieldJane]

You should never worry about perceptions of your 'credibility' SJ - after all we SHOULD be able to vent our concerns about whatever it is - if our doctor is sympathetic enough. Thing is we get so many strange and even contradictory symptoms it is easy to start ascribing these to worse case scenarios. But what worries me is that if we arbitrarily minimise or even 'dismiss' stuff it maybe the very thing we should be attending to - and HOW can we sometimes tell !!?? PMR and GCA must be 'classic' in terms of the diversity of symptoms and side effects we all get and so it is almost impossible NOT to be making frequent doctor visits - and after all THAT should be educative for them as well - it IS their job !!

XX

[SheffieldJane in reply to Rimmy]

You are quite right of course. Perhaps if doctors made links with the underlying condition rather than just treating the symptom it would feel more worthwhile though. I have had to buy a new piece of furniture to store the ugly pills and potions.

[Rimmy in reply to SheffieldJane]

'Furniture' - any excuse Jane - maybe I should try that one - I'd like a charming little antique escritoire - but not much hope I fear !

XX

[SheffieldJane in reply to Rimmy]

I love those. I have a nice little extra bedside table, carved in India from a fair trade shop. Otherwise it would be pills and jars all over my chest of drawers. Makes me feel ancient.

[Rimmy in reply to SheffieldJane]

That bedside table sounds delightful - but thinking Jane - that none of us are actually 'ancient' - we have just been around a human few years - and I have also been reflecting (as I am prone to do on those 'life and death' type questions - can't help it) that we are ALL actually VERY 'young' it's just that our physical selves that insist on 'declining' ... I just WISH I could have and do it ALL even ONCE again - including the 'hard' bits - we really don't have nearly enough 'time' in one small lifetime do we !? .....

[SheffieldJane in reply to Rimmy]

No we don’t! Mind you this might be our second go already. The same issues keep presenting themselves. 💜

[Berylholley in reply to Rimmy]

In a nutshell.

[Berylholley in reply to Rimmy]

Hi Rimmy my other reply was in the wrong place, after sj. I was impressed as you put it in a nutshell re credibility, even my own daughter doesn't believe me. So frustrating.

[Berylholley in reply to SheffieldJane]

Yes, all good advice thanks.

[nymima01]

Before I was diagnosed with PMR and didn’t know what was wrong, I went to see a neurologist who tested me for MG. My symptoms were great fatigue and a family history of MG. I didn’t have that, but I did find out I had PMR and another condition. I was started on 20 mgs of prednisone. I treated with Rituxan for the other condition and the PMR went away. I understand they treat MG with Rituxan too. It is a form of immunotherapy.

[Berylholley in reply to nymima01]

Thank you nymima01 that is interesting. I will ask if I can see a neurologist.