Alison Graham interview

Alison Graham has Generalized Myasthenia Gravis. We interview her about her experiences with this rare condition.

How does Generalized Myasthenia Gravis affect you?

It somewhat affects everything. The term ‘Generalized’ Myasthenia Gravis, meaning that it’s not only Ocular but body-wide, is succinct. In my case the hardest hit muscle is the diaphragm, so I have chronic respiratory failure. I can’t sleep without a ventilator or be too far from it at any time. My eye muscles are affected, and my vision goes double if I focus on something for more than a few seconds. My arms and hands are not strong. Swallowing is usually okay, but I have to be careful. Most of my muscles tire quickly, but my legs are quite durable. I love to walk outside when I’m able, and I make a point of being on my feet as much as possible.

For now I can’t work or drive, or read and write as I used to. I’m housebound due to infection risk. MG has changed my life completely. Thankfully I can still manage my chores and simple meals, taking breaks every few minutes to let muscles recover.

How long did it take to get the diagnosis?

Years. I had Ocular MG but was misdiagnosed with migraine, stroke, optic neuritis, even told it was “all in my head”. Then it progressed to Generalized MG, as it does in most cases. It moved to my neck, my arms. When it hit my diaphragm, I got very sick but I didn’t show the typical antibodies associated with MG. In fact, I had antibodies associated with another rare disease, which totally complicated matters. A very keen neurologist judged my symptoms and ordered an obscure test and there it was: the rare LRP4 antibody, known only to MG and ALS.

Did you notice any errors by medical professionals?

Unfortunately, several. I was not an uneducated patient as I had had health problems before, but some doctors are arrogant and stick to their opinions or modus operandi. For example, I had an EMG (electromyography) test, where a needle was placed in my eye muscle to test if it was firing properly. My eyelid was clearly already drooping at the time. The test came back normal. The doctor performing the test hadn’t prepped the muscle or performed the procedure properly. I knew this, and I was a mere patient.

Another specialist at an Academic Hospital was so stuck on an incorrect diagnosis that she denied me access to a referral to their top-level neurology department, where I clearly belonged. If a very aggressive pulmonologist at the same hospital had not stepped in and referred me, I wouldn’t have survived.

When I was in another hospital for pneumonia, my magnesium levels were low on an intake blood test. So the nurse hooked up a bag of IV magnesium to my pole. This amount of magnesium can kill an MG patient, as it can paralyze the diaphragm muscle, a condition I am already suffering. It’s a good thing I was conscious at the time, and caught the mistake. The hospital apologized. You really must be your own security guard as a patient.

How were you feeling throughout your diagnosis?

Frustrated and somewhat scared. My grandmother died of ALS and I wasn’t sure if that’s what was coming at me. I couldn’t breathe well at all; I couldn’t see or walk from dizziness and weakness. The doctors didn’t know what to do with me, and the threat of being put on mechanical ventilation was looming. Covid was just coming on the scene as well, there was so much fear in the air.

What was the most frustrating?

Not having an answer to the puzzle. Without it, I couldn’t move forward. I like to have a plan, even if it’s an attack plan. The neurologists were just throwing drugs at me, making me ill with side effects, hoping something would work. Once we had the answer, and I had the right treatment, within days I could breathe. I’m very grateful for the few doctors who went the extra mile and saved my life.

What was your clinical trial like?

I don’t want to discourage anyone from participating in a clinical trial. I realize they are vital to drugs research, and surely some people have great success.

Mine was a total disaster. I was taken off the MG drug that was working for me and put on this supposedly wonderful new “study drug”. Well, I was one of the 2 patients of 150 who got the “severe infection” side effect. The study medical team ignored my complaints of cough and declining lung capacity – they were more interested in collecting my valuable data. Once I became critically ill, I received no support from the trial drug company; my own insurance had to pay for my multiple hospitalizations. To this day I am fighting the trial drug company to confirm if I was on placebo or study drug. My lungs are severely damaged by the infection, and I will have to take toxic medication for life to keep it at bay. Not something a respiratory failure patient needed. I feel used and discarded. I thought I was helping, and might improve my condition. The opposite happened. The study is over, the drug didn’t come to market despite alleged “positive results”, and I’m left with a 5 year survival rate for this particular infection. But I’ll beat it. I’ve already surprised my doctors.

What could be done better to minimize hardship on patents?

Transparency and education. I do believe there are resources out there, and very helpful and dedicated people, but there is a gap between patients and support systems. At least here in the US, we hear all the time about millions of dollars going to waste on social programs. Yet when I go to the hospital or sign up for a heavily advertised patient program with my insurance company, I find there is no coordination and little information about local support groups, caregivers, therapists, anything.

I’m lucky enough to be able to afford health insurance right now, but if I couldn’t, I wouldn’t be sitting here writing this interview with you. My life-sustaining infusions are astronomically expensive, but 80% covered by insurance. I’m from Canada but live in the US with my American husband. In Canada they might not approve the infusions through the government health care system. So, we stay here. And my husband works 24/7, literally to keep me alive.

How much did your diagnosis cost?

It was financially devastating, since there is no universal health care in the US. It cost us $150,000 over three years to get the diagnosis - insurance premiums, specialist fees, surgery fees, drug and imaging co-pays. Insurance probably paid out $1M for my hospital stays when I became critically ill. I feel awful consuming such resources when there are hungry people in the world. There must be a more efficient way to handle medical care. Dispensing a dose of medication shouldn’t require 3 specialist fees and 20 minutes of high-cost labor because a patient is in isolation. It’s a racket. The itemized bills are jaw-dropping when you read through them.

What helped you cope throughout the diagnosis phase?

My husband is amazingly supportive, so hard working, and didn’t flinch when times became difficult. I’m hardheaded, tend to minimize things, and probably waited too long to ring the alarm on my condition. He doesn’t judge me when I screw up – that’s the best feeling in the world. When you feel safe at home, you can conquer anything.

Daily emails with my sister in Canada helped also. She dealt with my prednisone-induced rants like a champion (she’s a social worker). Our beloved dog was dying of old age during this time as well, so we spent a lot of time just sitting quietly together, a 13-lb ball of fur on my lap. I believe it was very comforting for us both. And each morning the local crows that I fed would bark at my window for scraps, so that motivated me to get out of bed.

Have you connected with people who also have Myasthenia Gravis and was this a comfort?

I don’t use social media, so it’s not very easy. I have helped one of my neurologists with a few patients who are having trouble getting diagnosed, and that felt good. I’m just recovering from the lung infection and able to have a somewhat normal schedule. I plan to be an “MG buddy” to a newly diagnosed patient after my next Neuromuscular Clinic checkup. I’m sure it will be a meaningful experience.

When I’m stronger I hope to be able to advocate in a more forceful way for patients who could benefit from the treatment that has helped me so much (IVIG), or perhaps for new treatments that are less expensive and non-toxic.