Posted By Posting
Jan 16, 2009
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including,,, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
OT-Degenerative neuromuscular disease
Yesterday I went to have an EMG done and other nerve conduction and muscle studies. They were all borderline abnormal.

The blood test is called Acetylchol Recep Bind Ab w/rfx,

AChr Binding Abs, serum

Negative is 0.00-0.24

Borderline is 0.25-0.40

Positive is 0.40 and up

Mine is 0.43

When I looked it up, it indicates a neuromuscular disease called myasthenia gravis-also an auto immune disorder.

The doc. is also sending me to have a chest CT. I looked up the codes on the script and he is having me evaluated for a tumors called thymomas.

I feel God will provide and take care of me, but it is a scary feeling that one day I might be totally disabled and not be able to care for Meggy.

I know there is always possibility that these test are wrong, or misdiagnosed, and I will keep looking for that. The neuro was also looking at a couple other degenerative muscular diseases.

I called Megan's genetic doc. and she is going to evaluate me for Mitochondrial disorder as well. She said that she will see me in February and push for a muscle biopsy sooner rather than later. I hope that she can get it done and that we can figure this out.

The neurologist wanted to play the wait and see game and just retest my blood and muscles in 1 year, and I am just not comfortable with that.

At least if it is this autoimmune disorder, there is chance for treatment that may even help the other two autoimmune disorders I have (interstitial cystitis and endometriosis)

The worst part is knowing that it is an aquired autoimmune disorder that came along with my cesearean. Can't help but to ask if the hospital that delivered and nearly killed my Meggy also gave me a debilitating disease.

I will continue to live life and make sure to find many things to enjoy in life daily and hope for the best. I believe truly that laughter is the best medicine. I also know that no matter what happens to my health, Meggy deserves the best in life and that means me making the most of every day, every hour, every minute. I guess it is just one more reason to thank God everyday that I am able to get out of bed and move around.

Thanks for reading such long Messages.

Jan 16, 2009
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
I can just say this: my sis has RA. She thought she'd be crippled by now but she is perfectly fine and caring for 2 grandbabies. My friend's mom has lupus and also is raising her grandbaby. I think the mental part of these diseases is what some people let get them down. Just keep your chin up and keep the determination to be there for Meggy. Like old people say, when you get old-you can't stop. You have to keep going or the age will get you :)

God bless! and don't let the docs quit on you :)

Jan 16, 2009
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
I'm sorry you are going through this, but Melissa is right....the mind is a VERY powerful organ and can make a huge difference in your overall health. Hopefully the tests are wrong. ((HUGS))

I will say this, though, because I'm dealing with it myself right now. Stress can have a huge, detrimental effect on your body. I am stressed to the max, coupled with worrying about Rory, and I have been sick for the last two weeks. Like, I want to curl up and sleep for a week, sick, and I can feel it in my core, that it is because I am so run down and stressed. I know that you have concerns for Meggy's health as well, and I just hope and pray that we both can find ways to manage the stress. You're right, our kiddos need us.

Jan 16, 2009
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
I hate to read this kind of news, but MG can be controlled very well now. I doubt your casearean caused it - there isn't any known cause for MG that they've been able to correlate. It just tends to kick in when it's ready. Prayers to you!
Jan 16, 2009
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
You have such a great attitude and you seem like such a positive person. I hope that you are able to get good treatment for whatever they find. Know that we are all here for you no matter what happens. HUGS
Check with your
doctor first!