Philadelphia patient forced on wrong MG treatment with painful side effects
We are a family of men and women that live with a disease that most don’t understand. A disease that hides like a “monster under the bed.” Many of us live in fear of what each day will bring.
Since I was a little girl I never really fought infection and always seemed to be sick. Not until I hit my late 30’s did the puzzle that I had been trying to figure out for years finally make sense. I was diagnosed with Myasthenia Gravis in 2014. After having my second back surgery and being put on a high dose of prednisone my body finally had enough.
Years prior I always had strange symptoms. Constant fatigue, eyes blurred, general muscle weakness, slurred speech but on that day in September, 2014 the “Perfect Storm” happened. I was having trouble seeing, my speech was getting worse and then suddenly I couldn’t breathe. After hours in the ER I was finally admitted and that is when my “hero.” otherwise known as Dr .Jimenez, walked in. She knew immediately what was wrong and she had me transferred to a hospital in Center City, Philadelphia.
After several weeks of a hospital stay, a breathing tube, countless vials of blood, painful electromyograms (EMGs) and hours and hours of explaining my past medical history, we finally had an answer.
While speaking with my team of doctors it was decided that I would start with Mestinon and intravenous immunoglobulin (IVIG) treatments as needed. I did fairly well until my insurance company delayed an approval of IVIG and I ended up in the hospital for five days. It was decided then that because I responded so well to IVIG that my treatments would increase to every six weeks and my dose of Mestinon would increase along with a small dose of prednisone.
Six months later I had another ICU stay with a breathing tube, and treatments increased to every three weeks. In June of 2016, after my third trip to the ICU and another breathing tube, my doctors decided to increase my treatments to every other week.
We tried other medications such as Cellcept but the side effects were horrible and I could barely get out of bed.
IVIG has proved to be a successful course of treatment, yet here I am again waiting for United Healthcare to give the approval. I was initially denied in January, and had to get my “hero” involved to complete a peer-to-peer insurance review, and only then (reluctantly) did they approve it—but only through April 5th.
I’m now two weeks behind in treatment. My body feels like a rag doll. My eyesight is blurred and I suffer from double vision. I have a hard time swallowing and my breathing is affected. I literally live day to day just waiting for the other shoe to drop.
If the decision makers could live one day in our shoes they would understand the pain and agony, the emotional and mental stress not just on us but our families.
Stress is the number one reason that MG patients fall into crisis yet this seems to be what we deal with the most.
If they could understand that having a breathing tube and sedation feels like you’re buried six feet under but you’re still alive. You feel and hear everything. You lay there not being able to move yet all you want to do is rip every tube from your body and scream “PLEASE HELP ME!” It is the most excruciating pain I have ever felt (three times) and can be easily avoided.
These insurance companies hold all the cards. They have all the power. They dangle a carrot right in front of you. That carrot is life.
No one should live like this.
No one should feel like a burden.
No one should have to live some days in bed because they are too weak to get up. No one should live not knowing if the next time they get sick whether it will end up being a hospital stay or ultimately death.
Your entire life is on hold.
You cancel plans because you’re too tired and sick.
You miss out on watching your kids’ sporting events.
You push off holidays because it’s just too tiring to keep up with visiting family or friends.
You lose friendships because most don’t understand what you’re going through.
You lose employment.
You lose financial freedom.
You become depressed.
Every MG patient is different.
Every MG patient responds differently to treatments.
Every MG patient has a story.
Any patient who has been denied access to a treatment recommended by their doctor is encouraged to call Patients Rising’s patient helpline at 202-750-1168, or email: info@patientsrising.org. Patients Rising, a leading patient advocacy organization, was formed to stand up for patients, advocate for their rights, and fight for their access to the medications they need and deserve.
