Myaesthenia Gravis

CathyMoran

I have a close relative who is currently very ill with this - I just wonder if anyone else has experiences of it and have they had a normal life.

LegacyUser

Hi Cathy,

I was diagnosed with mg this time last year, it all started with a myasthenic crisis and a six week stay in hospital.

Took a while to get the right drugs to get me back to normal but i am back to myself now, no suptoms, just side effects of the drugs.

Mg os really different for everyone, the more your relative reads about this the more they will realise that they are different to anyone else with mg.

If you have any specific questions though, ask away, i almost feel like an expert in this area after a years worth of research.

Contacting the MGA is a good idea too, they will send you out an info pack.

Not many people out there with this, i have yet to meet someone else with it!

No need for your realtive or you to worry though, its annoying for any sick person to hear but it really could be worse, out of all the long term illnesses out there it is not the worst. At least there is no pain, its not a death sentence and you can learn to manage it.

As i said, ask away with the questions, there are lots of treatment options, had all the treatments and all the tests, some of which worked some didnt...

CathyMoran

Thank you so much for that, we are so worried about my relative that my brother and I want the person to live with us. He is still critically ill with it.

milltown

I was diagnosed almost 7 years ago now.

Frightening at first, and the first 3 - 6 months were probably the lowest point I have had in my life. As the other poster said, it takes time to find the right treatment for individual cases and balancing meds and side effects. Steroids are part of the solution short term but are often replaced by Imuran, which takes a full year to take effect. Pyridostigmine is the wonder drug in my case (Mestinon) but again it takes time to find the right dose.

The good news (for me at least) is that I have been largely symptom free for the past 5 years and haven't seen my neurologist in 4. If you're looking for light at the end of the tunnel, it is there. Once I take my couple of tablets a day there is nothing I can't do that I could do pre-MG.

Believe it or not, for a lot of people getting diagnosed is the hardest part. A solid diagnosis and a good neurologist really are the first two steps towards getting better.

Feel free to ask any questions, here or by PM.

CathyMoran

My relative first was treated for a droopy eye...he is still in ICU on a ventilator and they are trying to put him on a trachy now, we are fighting it as his daddy died on a trachy...he spent over 12 hours on pressure support today.

I am being tested for it as I needed to know plus my close relative and I tend to have overactive immune system illnesses...will pm thanks, just in the morning, need sleep, sorry and have been running around all day.

CathyMoran

Update on my relative and on me - got the antbody test and it was negative for me but will keep an eye on it.

Relative off ventilator, had angiogram and was fine and is leaving hospital soon but has a new respect for it and will look after it now.