Helen M. Sheehy
 

I suffer from MG diagnosed in 2006, exactly one month after my husband died unexpectedly, although it took 10 yrs. to arrive at a diagnosis. My main problem is FATIGUE. My neuro says that MG does not cause low energy levels, just tired muscles. Does anyone else suffer from fatigue -I would love to get some support. Helen:confused:

Fatigue
 

I am 61, have been diagnosed about a year and a half. Fatigue is a major factor in my daily activities. 2 hours after arriving at my job site I am ready for a long nap, even though I slept all night long. It cannot be age alone as I have been active my entire life and this constant tiredness knocks me for a loop both on the job and at home. My wife says I instantly turned into an old man with no energy to do anything.

I' m almost 69 and my MG has been diagnosed in June.
Fatigue is now almost the only problem remaining, specially in the legs.
Mg perturbs the connection between the nerves and the muscles which gives you the impression you are tired.
Do you take any medication and what kind?
Was there any evolution in the symptoms which affected you during those 10 years of errance for the diagnosis?
Maurice.

Hi Helen,
this is a never ending battle of wills between me and my neuro!!!!
Around the time I was diagnosed I would get home from work, have a glass of milk for dinner(no energy to cook dinner!) and fall into bed at 7pm and if I wasn't working the next day, I would sleep til 9am!! Then have a nap in the afternoon!!. I even fell asleep at work a couple of times, unheard of for me!!
On a recent visit to my neuro, at the hospital, with 2 interns in tow, we started on the "tired" subject, he said "she often has trouble differentiating between muscle fatigue and tiredness, as mg doesn't cause tiredness"
Welllllll, I let him have it, and when he retaliated I let him have it again. His explanation for me being tired was that I was studying while I was working(an apprenticeship) So I explained I wasn't shy of hard work, in fact I use to work in a vineyard, up at 5.30am, home at 5pm chopped wood, cooked dinner, bed at 10pm, with no problems. I think "oh" was his response.
He turned to his interns and started explaining to them how people with MS, get "tired" from having to exert a lot of enery to get muscles to work, maybe it was similar in MG. I nearly cried out "wow, really", but restrained myself. But not once did he turn to me and say this may be what was happening to me, oh well I guess I have to start small and work up.
sorry for the long winded reply, I think I needed to get it off my chest. Hope it helps
redtail

The explanation for my fatigue and pain is that not only do I have MG, I have steroid myopathy.
Now, I had Cushing's disease that was untreated for years and years (over a decade due to endummies) and my muscles took a beating. But this really severe weakness and fatigue started AFTER I was absolutely cured = that is, my adrenal glands were removed and my steroid levels were returned to normal and have been that way for two years. I have been told and read that it is too late for steroid myopathy but... that is now the explanation.
I used to be an active person as well but they just will not hear it. My cushie body goes against me.
I support you in that fatigue is a big part of this.

Your Neuro is Wrong.
 

Hey, just wanted you to know, Your Neuro is Very Very Wrong...

Here is a link to an MG Expert on the subject of MG and Faitgue.
http://youtube.com/watch?v=jNRaVnkQGs4

Please seek a new neuro, one that is familar with MG. It's so important.
Best of Wishes
Lizzie

Hi Helen,
I too have huge issues w/ fatigu. Yes, muscle issue are a major problem-especailly in my legs, but I am tired, exhausted, most of the time. I am confused why your neuro would suggest that your fatigue isn't from the MG - that just is not right! Anyway, I wish you improved health, energy, and peace.

Nancy Lee

Have you tried Provigil for the fatique? You may want to ask your doctor about it, it has made such a difference in my life.
Love Lizzie