Myasthenia Gravis

[Ethel]

Anybody here got it? I'm floundering.

[Ice.Maiden]

Hope not Ethel. Not a very pleasant thing to have.

[amsterdammer]

How many letters?

[Ethel]

I am presenting all the symptoms - which are quickly worsening. I had an initial diagonisis of 'suspected MG' in November, in hospital for one week Decemeber for tests - all negative or inconclusive.

In the mean time I am getting much worse and no treatment.

Starting to panic somewhat.

No suggestion of other possibiliities either.

I wanted to know if anyone else had any difficulty getting a firm diagnosis and treatment.

[moonshadow]

I hope you don't mind me asking Ethel but are you suffering from double vision or are your eyelids feeling heavy? I have noticed on your postings lately that sometimes you put too many i's in the words and you never used to make as many spelling mistakes. I am not doing a Lucy Thomas here, it may have something to do with your condition.

[Ethel]

Both eyelids are drooped badly, I have double vision, weakness in my arms and my left little finger in particular.

My head feels very heavy at times and it sometimes feels as if I'm walking on sponge.

When I went to the doctor in October I had a slight droop in one eye. By December it was both eyes.

My mouth has drooped so I occasionally dribble.

My arms get very tired and even from typing - and I have been a touch typist all my adult life.

[moonshadow]

I really think you should ask to be refered to a Geriatrician you have mentioned on a number of occassions that you are elderly and he will have more idea than a General Practitioner. Some years ago a close relative had similar problems and we were backwards and forwards to the hospital and doctors.To cut a long story short we where getting nowhere so clubbed together and went privately to The Nuffield Hospital. 48 hours later we had a diagnosis of Myasthenia Gravis. They put him on medication and he slowly came back to good health.The irony was the specialist we saw at The Nuffield was the local NHS Geriatrician who we should have seen in the first place.Have they done a test on your Thymus do you know?

[Ethel]

I am under the care of a neurologist and spent a week in the neurology dept having all sorts of tests - including thymus and chest x rays.

My GP is very good and referred me as soon as I saw him.

I am just frustrated at having no treatment because the tests are inconclusive, and no investigations in to anything else it could be. Nothing else has been suggested.

I don't know of anybody with this condition - I'd never heard of it.

[moonshadow]

As your condition has obviously deteriorated very quickly by the sounds of it why not go back to your doctor and ask for a second opinion.They could perhaps do a CT scan on your Thymus. What if you deteriorate further, I'm sure you have said you live on your own and I am starting to get worried for you and feel something should be done to help alleviate these symptoms it can't just be ignored.Ethel this really is awful.

[Ethel]

I'm having yet more tests at the hospital on Thursday am.

I will be assertive, hopefully.

[bigmamma]

Sorry to hear you are not well Ethel honey , I do not know anything about the illness but I do hope your doctors can make your condition improved and find out what it is. Keep us informed if you can , and all the best for thursday :-)
xxx

http://en.wikipedia.org/wiki/Myasthenia_gravis

[sallywebb]

Hi Ethel, you won't know me, but you are so lovely, wish you good luck today, hope all goes well, sally xx

[smudge]

Hello Ethel - the lovely bigmamma mentioned on another thread, that you were having tests today.

I am so sorry to hear you've been poorly & hope that the medical staff will soon be able to give you a diagnosis & treatment, making you feel much better very soon.

Take care & keep warm. -xx-.

[weeal]

Ethel, I wish you well
Youre smashing !

Al
xx

[jno]

there's a lot of stuff here, some of which may be of use

http://www.mgauk.org/main/mg.htm

Good luck; I'm sorry to hear you're suffering.

[Drisgirl]

Ethel -cant add to what everyone else has said -know you are not the type for sympathy -looked it up on the link -looks like you have to be very asserttive cos I think you could get help if you stomp your feet and get really under their skin.

Good luck pal x.

[figure]

Ethel - Hope everything is well or better than expected with you, and everything is working out in your favour. Best wishes and a speedy recovery to you. xxx

[Ice.Maiden]

Ethel - my best wishes to you. I hope you can soon start to feel better. Moonshadow's reply is heartening - x

[netibiza]

Hi Ethel, so sorry to hear that you are having problems. My sincere good wishes for a speedy diagnosis and an even speedier recovery. You are such a help on here, we need you! Take care - love neti x

[Kleiber]

Hi, Ethel - I've followed yours & bigmamma's posts. I do hope you find a consultant who can help you with your problem. Good luck, love, K xx

[Robinia]

Hope you're feeling better soon Ethel & wishing you all the very best. x