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bny806 11-18-2011 03:56 PM

Any help would be greatly appreciated..
 
I'm awaiting diagnosis for welll, they have no idea right now, but MG is on the differential.. basically long story a little shorter- i'm a 31 yo female, had back to back pregnancies (after years of fertility treatments for my first one). I was doing great after my son was born 8 months ago, running feeling great for the first time in a long time, and then I had an IUD put in, and it perforated the uterus, i ended up in the hospital getting blood transfusions and never bounced back.. since then i've been REALLY weak! Like hardly can put one foot in front of the other at times.. I did have a few weeks where people commented my eyelids were sagging/closing.. but that has since passed. ... I also developed GI symptoms- where I started having up to 20 bowel movements a day and lost A LOT of weight 16 lbs below normal weight for me in addition to baby weight (and i'm a thin person).. anyhow they assummed i had celiac dz (after colonoscopy endoscopy etc)
Anyhow... I have had muscle fasciulations for three years, but the last months they have really started up all over my body, along with one day my right leg felt weaker than my left, and then a few days later my hands and shoulders felt weak.. and even my face- when I smile I can't hold a smile for long, and if i do, then my face trembles and is fatigued for hours.. I had a neuro exam yesterday and my right arm is sore and fatigued feeling STILL!!!
anyhow i've had negative head and neck MRI, two EMGs- normal.. and all my MG , LES bloodwork is pending.. the freaky thing is that i feel like I have tongue fasiculations, and my speech is a little off with certain words (no one else has heard it, but i can feel it) Does this sound like it could be MG??? I"m of course completely terrified its something worse like a motor neuron dz, but they are telling me thats unlikely- thank goodness.. but until we can put our finger on something else, i'm going to still be worried.. thanks again in advance for ANY advice/experiences!

alice md 11-19-2011 04:49 AM

Quote:

Originally Posted by bny806 (Post 825733)
I'm awaiting diagnosis for welll, they have no idea right now, but MG is on the differential.. basically long story a little shorter- i'm a 31 yo female, had back to back pregnancies (after years of fertility treatments for my first one). I was doing great after my son was born 8 months ago, running feeling great for the first time in a long time, and then I had an IUD put in, and it perforated the uterus, i ended up in the hospital getting blood transfusions and never bounced back.. since then i've been REALLY weak! Like hardly can put one foot in front of the other at times.. I did have a few weeks where people commented my eyelids were sagging/closing.. but that has since passed. ... I also developed GI symptoms- where I started having up to 20 bowel movements a day and lost A LOT of weight 16 lbs below normal weight for me in addition to baby weight (and i'm a thin person).. anyhow they assummed i had celiac dz (after colonoscopy endoscopy etc)
Anyhow... I have had muscle fasciulations for three years, but the last months they have really started up all over my body, along with one day my right leg felt weaker than my left, and then a few days later my hands and shoulders felt weak.. and even my face- when I smile I can't hold a smile for long, and if i do, then my face trembles and is fatigued for hours.. I had a neuro exam yesterday and my right arm is sore and fatigued feeling STILL!!!
anyhow i've had negative head and neck MRI, two EMGs- normal.. and all my MG , LES bloodwork is pending.. the freaky thing is that i feel like I have tongue fasiculations, and my speech is a little off with certain words (no one else has heard it, but i can feel it) Does this sound like it could be MG??? I"m of course completely terrified its something worse like a motor neuron dz, but they are telling me thats unlikely- thank goodness.. but until we can put our finger on something else, i'm going to still be worried.. thanks again in advance for ANY advice/experiences!

This is just shooting in the dark, but did any one assess your endocrine function? The proximity to obstetric complications raises the possibility of Sheena's syndrome. Some of what you describe may fit. And as it is a treatable disease, it is worthwhile to consider it.

bny806 11-20-2011 05:00 AM

thank you so much for your response! I have had my TSH, T4, T3 etc checked three times since this all started, but none of the other endocrine labs.. it all originally started with gritty dry eyes weight loss and tachycardia.. i just knew it was my thyroid... post partum thyroiditis I thought.. but it has consistently been completely normal! I wonder if the other endocrine hormones could still be off causing the symptoms??

alice md 11-20-2011 11:04 AM

I am neither an obstertrician or an endocrinologist, so this is not my field of expertise. I do not think normal thyroid function rules out this possibility. Mostly that it may be in the low normal range, but a decrease compared to your baseline results. Like I said, this is shooting in the dark and I may be completely wrong, but I think it is worthwhile to consider.
what ever it is, I hope they figure it out soon and more important find the optimal management approach.


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