Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hey DS'ers! My daughter has been on 50 mg prednisone , now down to 40mg's. Seems to help what we hope is "reactive arthritis" not lupus or a Connective Tissue Disorder. It has helped but she still faulters between 103-108 lbs which is good for us!! She is 5'8 would be 5'10 if had no scoliosis, so you can see the concern for her weight loss even w/ eating & taking Prednisone now which typically adds weight. The doc has tried even Marinol (a synthetic derivative of the appetite stimulant in marijuana), Megase only a little success. We just think her body is still recovering from undiagnosed Celiac disease for so long. Her ANA came back this time just barely above positive & she is still having hair loss in same spot on head. We are not sticking our head "in the sand" so to say but are trying all things possible before one of those labels!!!
John Matthew has missed more days of school than attended, but we are working through his health issues also!! I have more test myself next week.... Can anyone agree that this regimen is getting old.... But we will go on! One more visit/day is that much closer to absolute answers & solutions. Sometimes iit is trial & error, most often it is for us all,lol
Love all MeLisa
John Matthew has missed more days of school than attended, but we are working through his health issues also!! I have more test myself next week.... Can anyone agree that this regimen is getting old.... But we will go on! One more visit/day is that much closer to absolute answers & solutions. Sometimes iit is trial & error, most often it is for us all,lol
Love all MeLisa
Yes..health issues (especially yours and your children) can get VERY OLD. I don't know how you do it!
You sure have the right attitude. Sending you love and best wishes for you/family.
Stay strong and thanks for sharing.
Bruce
What test do you have next week? How are you doing? :)
Jeannie
hugs
sherry
My daughter goes in Monday & I go right back in Tuesday, Might even be in his office today w/ me son, just had to give him morphine to stay out of ER for pain control!! That's just not right , having morphine in your home for your 11year old!!! Don't know that I'll ever get over that one!!! ;( MeLisa
You and your family are amazing MeLisa.
Hope there is some peace and happiness in everyone's weekend.
TJ
It is good to keep an eye on things, but the reason you have no energy does have an obvious explanation. If your doc had to be the mother of only one child with problems, much less with two, not to mention MG and other difficulties yourself . . . Do you get any sleep?
I know there are other considerations, but It just amazes me how you can put one foot in front of the other. The power of positive thinking, the support from the group, being a mother, we do what we have to do--it's magic or a gift from above, but while giving out gifts how about a little more wellness in your direction. So will just have to send virtual hugs your way and hold you all in the light. b.