Hi All,

We are not new to this MG diagnosis. However, what we are new to is having doctors discount, disregard, and refuse to accept/treat the diagnosis.

Mycha was diagnosed with MG when she was 15 (she is now 22). From the time of her first REAL symptom (we know can see that there were symptoms prior), which was her left eye shut one day and didn't re-open for a long time, until the time her diagnosis came was only about six weeks. During those 6 weeks she went from a normal active teenage girl to being fully incapacitated to where she could no longer attend school, and I had to carry her everywhere.

When the diagnosis came we were relieved - we had a game plan, and everything worked. She received IVIG in preparation for her thymectomy, and then IVIG again after her thymectomy to aid in recovery.

Then for about 5 years she was well managed by prednisone (7.5 mg per day) and mestinon (180 mg per day).

Two years ago, our nightmare of not being believed began......

In 2012, Mycha had an exploratory laparoscopy to see if the source of some abdominal pain could be found. The doctor found some endometriosis and 2 iguanal hernias. The endometriosis was removed and she was scheduled for bilateral hernia repair.

However, waking up from this laparoscopy Mycha's blood pressure rapidly dropped, she could not breathe, she was in urine retention, etc. She was quickly admitted inpatient, stabalized with IV administered mestinon (I know it has a different name, but whatever), and then received IVIG. This is the LAST time she received appropriate care for her MG.

She recovered and walked out of the hospital 5 days later.

With this adverse response to the anesthesia and such, we felt empowered and armed to have a better outcome following her hernia repair, which was 3 or 4 months later. Alas, that was not to be. Once again, she woke up poorly, but this time instead of listening about the MG, the doctors diagnosed her with "conversion disorder" (even with new seropositive blood tests) and sent her to the physical rehab unit.

She did recover, but it took 6 weeks for her to walk out of the hospital. We do NOT attribute her recovery to the physical rehab but to: time, rest, and her body finally metabolizing the anesthesia out of it, combined with an increased dosage (20 mg per day) of prednisone.

Early 2013, her gall bladder had to be removed because it was found to be infected. This time coming out of the anesthesia, she coded and had to be intubated. Again, they did not attribute her weakness to MG (despite our repeated arguments/protestations to the doctors on her behalf). Called it conversion disorder and sent her to physical rehab.

Again, she did recover, but this time it took about 8 1/2 weeks in physical rehab and another increased dosage of prednisone (40 mg per day).

In November 2013, a glioma (brain tumor) was found. On 11/12/2013, she had surgery to remove the glioma. Her margins are clean and clear. She has not been home since November 2013. She has either been inpatient or in a skilled nursing facility. The insurance has now stopped paying because in their opinion this is not medically necessary becuase the doctors now for the third time in 2 years are refusing to accept her MG diagnosis and will not treat.

They raised her prenisone to 60 mg per day, and she is still essentially a quadrapeligic. We live in Utah, and the doctors doing this are at the University of Utah Med Center and Neurosciences Dept. They claim to be neuromuscular expercts, but even though again her antibodies are positive for MG because the EMG shows "normal" they will do nothing and are calling it conversion disorder.

We're looking at taking her to Duke or Johns Hopkins for evaluation.

I'm just at such a loss and so frustrated. Has anyone else had a similar experience? Has anyone been treated/evaluated at Duke or Johns Hopkins? Has anyone had to unravel misdiagnosis in a patient's medical records with insurance and the medical records?

Please provide me with any info you can. Also, because of the doctors' "diagnosis" of conversion disorder, we are having to do all this on our own without insurance until we can start to unravel some of it.

*edit*

If any of you have experience, with trying to get past the road block of doctor(s) who will not accept MG diagnosis and instead prefer to label it a psychiatric disorder, please respond with any suggestions you have about how I can help my daughter fight this and get the treatment she needs.

Thanks,
Mina **