As a person who suffers from Multiple Sclerosis I have read a lot over the years about being your own best advocate. I feel like I am a very proactive patient. I take great pride in the fact that my husband and I research every treatment ourselves before making a decision. Often doctors are surprised at how much we already know when they speak with us about a new treatment option. I thought that as an educated, involved patient I was above being duped by my doctor. I was wrong.
Trust but verify. This phrase is a popular one with my husband Chris. As plant manager of a sawmill and the father of teenagers this principle is one that he lives by. Yes we trust our children, but if they ask to spend the night at a friend’s house we still want to talk to that friend’s parents to make sure we are all on the same page. When my daughter was younger it was embarrassing to her that I called the parents of her friends to make sure she was there. “Don’t you trust me?” was a question that when asked would bring guilt and doubt about my parenting. Shouldn’t we trust our kids? Yes, if they have earned it; but even then “trust but verify” keeps us from the murky waters of miscommunication and temptation. Six teenagers later I don’t feel bad about verifying their activities, and if they are on the up and up, neither do they.
Trust but verify is not only a requirement for solid parenting, it is also a necessity for a variety of interactions that range from sales people to service representatives to medical professionals. Sadly deals based on a handshake and phrases like, “my word is my bond,” are idealistic and meaningless to me. If a person tries to make me feel guilty for wanting solid verification whether in business or personal life my nonsense radar instantly goes up. I should know by now to pay attention when that happens, but alas, I let one get by me recently and it was a doozy.
Since my diagnosis of Multiple Sclerosis in 2001 I have had five neurologists. One I left because of personality issues, one because he was wrong about too many things in a row, another was brilliant but just too far away, and my last because he was either not truthful or just ignorant about my test results and medical status. I was with him for six years which was the longest of all of them. He got away with giving me wrong MRI results for about five years. For this article I will call him doctor X.
How did this happen to me of all people?
1. I did not ask to view my records myself. All of the previous doctors showed me my MRI scans and I requested the reports and a disc from the imaging center. When I started with this particular neurologist I was in the middle of a divorce, worn out, sick and very distracted. When I had my appointment with him, he just verbally told me the results instead of showing me the scans and explaining them to me. I asked him when I would see the scans and he said that he had viewed them and made notes prior to my appointment and there was no need to show me. I did not want to argue and just chalked it up to him having a different style/bedside manner than my other neurologists. Thus started the trend of getting results with no verification or proof. Dr. X had been a neurologist for a long time. I should just trust him right? Why wouldn’t he tell the truth?
2. I let him talk me out of my own intuition. When I had a flare up in the Spring of 2011 I knew that at least part of the new damage was in my C-spine. I had a severe case of L’hermittes Sign and several falls. I already had a large lesion going through my C1 and C2 vertebrae from before. I requested a C-spine MRI with my brain MRI to assess new damage. He refused. My old doctor would not have hesitated to order it. We had already started steroid infusions to help stop the exacerbation and I was starting the disease modifying therapy (DMT) Tysabri (aka Natalizumab). He said, “You are already going on the most powerful MS drug in existence. What would it change about your treatment? Nothing.” I caved. I didn’t want to argue about it and it sounded logical at the time so I let him talk me out of it. He was the expert, right? He also made excuses saying that it would be difficult to get insurance to pay for a spinal MRI for MS, though my insurance had never before declined to approve an MRI of any kind.
Looking back I can now articulate that what I wanted was a baseline MRI before starting a new DMT. I wanted to know the extent of the damage that had happened to my brain and spinal cord before I began the new drug so that we could track any new developments while on the drug, and clearly know if it was working to protect me from new MS damage. We did a brain MRI two months after starting Tysabri and I was told they had found one new active brain lesion but that they believed it was from the flare up right before the start of Tysabri. He declined to do a spinal cord MRI even though I insisted that according to my research (and, you know… 10 years of MS experience) many of my symptoms originated in the cervical spine. Through all of this he kept a tone that was helpful and encouraging, though we had a difference of opinion.
3. I let the monotony of living with pain and disease beat me down into just accepting the medical routine. After starting the new drug we fell into a pattern for about 3 years of monthly Tysabri infusions with a brain MRI every four months to check for new MS lesions and for something more sinister; they were looking for any sign of a deadly brain infection called Progressive Multifocal Leukoencephalopathy (a.k.a. PML) which was a possible side effect of the MS drug Tysabri. I tested positive for the JC Virus which increased the chances of me contracting PML.
The drug can be very effective in slowing MS. Some people were able to be up and out of their wheelchairs after receiving treatment. On the other hand, I had about a 1 in 2500 chance that it could kill me, according to my neurologist. With infusions every 4 weeks (13 a year) the cost for the drug and administration was over $80,000 a year. My insurance coverage took care of 80% and I had copay assistance from the pharmaceutical company for most of the rest. Up to this point I had failed other MS DMT’s and was struggling to walk without falling. If the drug worked I was willing to take the risk, but if it was not working I needed to be off of it.
I felt better for a year or so. In the winter of 2012 the choking began. I was choking on my food, drink and much of the time, on my own spit. It was the most frightening symptom I had ever experienced. I have been blind in one eye, paralyzed over 3/4ths of my body and unable to dress myself, but choking scared me the most. I injured my vocal chords twice because I choked so hard. We went back to my doctor and he sent me to an ear, nose and throat specialist where they sent a camera up my nose and down my throat to investigate the dysphagia. I went to speech therapy to relearn how to eat, drink and swallow and talk. My neurologist ordered a brain MRI, but still no spinal cord MRI.
In my experience with MS, brand new symptoms in your body mean brand new lesions/damage in the central nervous system. I knew with all of my heart that I had new lesions. When Doctor X came in with the results of my brain MRI he claimed that there were no new lesions. I asked again about having an MRI of the cervical spine. He again argued that I was already on the best treatment option and it would not help my treatment even if we found something on the scans. His tone was helpful and fatherly in nature, but started to show a tinge of condescension when being questioned about his methods. He started to downplay my symptoms in comparison to “really sick” patients he sees. I focused on my therapy and diet and decided that if I did not improve I would insist on a cervical and maybe thoracic spinal cord MRI.
The choking went away after a few months of speech therapy and doing throat exercises that would have made people think I was batty if they overheard me. I had to read sentences off of a page and yell them, forcefully emphasizing each word with “hard glottal attack.” I had visions of people walking past my house while I forcefully yelled things like: “My husband drives too fast”, “It’s beauty that surrounds you”, and “That wasn’t me you heard.” I thought they might try to have me committed. It sounded crazy to me! I faithfully did my exercises, yelling Aaaaahhhhhhhhhhhhh for as long as I could hold it out and timing myself. I also cut my muscle relaxants in half. My worst constant MS symptom is muscle spasticity. My muscles often pull my bones out of joint when they spasm. It is quite painful and there are two muscle relaxants that I take just to keep myself intact. I knew that by reducing the dosage my pain would double, but I reasoned that maybe the meds were over-relaxing my throat muscles and making me choke. Doctor X and my GP said it was possible so I took half my normal dose.
So when the choking episodes calmed down I stayed on Tysabri to manage my disease and did not nag my doctor about more imaging. The nice thing about Tysabri is that it is one monthly infusion instead of daily or regular injections like some of the other MS DMT’s. As I mentioned above, I received an MRI every four months while on Tysabri. After the initial scan I was told every time that I had no new damage to my brain for years. If that were true it seems that it would be worth some risk. I was lulled into a sense of wellness by the words, “no new damage”, from my doctor. This was in direct contrast to what I knew in my heart and everything my body felt.
In October of 2013 I started getting sick again. It started with an exacerbation in September with increased fatigue, muscle pain and spasticity. I would hit a brick wall every day at around 4 p.m. – right before the kids were to get off of the bus from school, my husband would be getting off of work soon, and dinner needed to be started. Chris (sweetie pie that he is) would call on his way home from work to check on me and see if he needed to take dinner preparation off of my hands. I was feeling useless. The migraines returned. They had been pretty much under control for over two years since I began a whole foods anti-inflammatory diet. I had gone from fifteen migraines a month to having only two. Then the monthly headache count climbed back up to around ten a month. The twitching in my legs returned in the evenings when I was tired. The worst symptom though was the constant sensation when walking that my legs were about to buckle and cause me to fall. Falling was the problem that got me to start Tysabri in the first place. Many of you with Multiple Sclerosis know the fear that had me doing the MS shuffle and walking close to walls and furniture for something to hold onto, just in case.
I went back to my neurologist. I told Chris that if Doctor X did not agree to do the MRI’s and show me the results this time I was done and would find a new doctor. We went in and explained my symptoms and he seemed unconcerned. He wanted to focus on new medications for my symptoms. Meds for nausea from the dizziness, meds for nerve pain, meds for fatigue, (though every Rx I have tried for fatigue increases the muscle spasms). I wanted to focus on the cause of these new symptoms, he just seemed to want to mask them and go on risking my life every day on Tysabri. My husband helped me have a very pointed conversation with him regarding the differences between his approach and ours. He first seemed angry, then condescending and after pushing a little more he seemed to understand and cooperate with us. We felt that breakthrough with him might actually occur. He finally ordered a C-spine MRI. He also said that there was a new test to stratify my risk of getting the brain infection PML from the drug Tysabri. I thought that finally I was getting somewhere with him. I was told that it could take up to two weeks to get the Anti-JCV Antibody Index back, but that they would call me within a few days with my MRI results.
I waited, and I waited some more. Part of me thought no news is good news the other half of my brain wanted to see just how long they would go before calling me. After a month the time came for my next Tysabri infusion. I called and left a message for the nurses the day before. No one returned my call. I thought no news is good news and got my infusion (the infusion center is separate from my doctor’s office). I waited some more and still no news. Finally I had an upcoming trip to New York with my husband in December, as well as another monthly infusion coming. I started calling the office and left messages for the nurses that it was vital that I hear from them immediately. Seven weeks after my tests and six weeks after they had the results in their hands my doctor called me. He left a voicemail because I was busy. I listened to it and I knew he was not being completely honest with me. He stated that I did not really have any new damage to my C-spine. He also said that the Titer Index test for PML risk showed that my risk of contracting this deadly infection had gone from being 1 in 2500 when I began taking Tysabri to being around 1 in 100.
Knowing that my risk was this high, he delayed telling me and had allowed me to be infused again with another month’s worth of this drug. Tysabri actually takes up to six months to be out of one’s system so by withholding my test results for 6 weeks he ensured that I would be at unbelievable risk of illness and even death for another couple of months. I was livid. We were playing Russian roulette with my life! All of this to treat a disease that is chronic but won’t likely kill me. I think I was even more angry with myself for not pushing more, for not being more proactive. A week before my New York trip I declined my monthly Tysabri infusion. I called a new neurologist who was highly recommended by a friend. She could not see me until I returned from New York. I contacted the good doctor X one last time to get more information about my risks and my MRI results. He returned my call and said the same thing he said on my previous message. When he said, “You don’t really have any new damage to your C-spine.” I asked him what he meant when he said the word “really“. Did I or did I not have new lesions? He said, “You don’t have any enhancing, lesions.” I asked, “but I have new lesions that weren’t on my last MRI?” He said, “Well you have a few going through your C3…C4…and C5…” and he trailed off. I asked if I were to refuse my Tysabri infusion would I be okay while in New York? Could there be any negative effects from just stopping it? I didn’t want to end up being severely ill on a trip thousands of miles from home. He informed me in the most sarcastic manner that there were plenty of emergency rooms in New York City and that I would be just fine. I informed him that I would not be continuing with my current therapy, thanked him for his time and hung up. It was all so calloused and uncaring. I could not believe his behavior and reckless disregard for my health.
Upon returning from the Big Apple I started therapy with my new doctor right before Christmas. When I explained my experience with Dr. X to her she initially gave him the benefit of the doubt saying that maybe he was not necessarily wrong, but that he just interpreted the information differently. She did a brain MRI and we together looked over that with my spinal MRI compared to my old pre-Tysabri MRI scans. We found that I have three new big brain lesions from MS that I was never told about with my many brain scans in those years of treatment. I also have around 10 smaller lesions that she calls migraine spots that I was never told about. She says that we will keep an eye on them and if they get bigger we’ll call them MS lesions. When we viewed my former doctor’s C-spine scans they showed that I have new lesions going from my C3 all the way down through my C7 vertebrae. When I started with Dr. X I had three brain lesions and one big spinal lesion going through my C1 and C2. I now have well over double that and was only ever informed of one.
I had MRI scans done again last month of my brain, C-spine and T-spine. It is the first brain scan done with contrast dye since 2009 after my first year with Dr. X. I was with the PA when she viewed it before the tech had even finished his report. I immediately spotted something on my brain, it was bigger and different than any lesion and sat on top of my brain kind of pushing into it. I pointed and asked what it was. I found out that it is a Meningioma. It is a brain tumor that is most often benign, but in 10% of cases it is classified as atypical or cancerous. Even if it is classified as benign it can be misleading because they can still grow slowly and put pressure on the brain or spinal tissue resulting in disabling or even life threatening outcomes.
The PA consoled me that it was small and that most meningiomas are not deadly, but that we would just monitor it from now on. All the while I’m thinking, this is all I need, another big question mark floating around in my brain! On my way out of her office I was on my phone googling meningioma. The first thing I saw were pictures of large brain tumors. Go ahead, google it. Now go to images. Now doesn’t that just scare the pants off of you? We were two hours from home so my husband, (Mr. Sweetie Pie) took me for food where I continued browsing the web for more horrifying information, and then took me to my daughter’s house where he knew I could be distracted by my beautiful 9 month old grandson. While there, about an hour or so after my visit I got a call from my neurologist’s office. The PA had taken my scan to my neurologist and they had gone through all of my old scans from Dr. X. There had been nothing in my records from him about a meningioma. They searched back through the last five years worth of MRI scans before getting to my 2009 scan. There it was in all of its glory. It had been found in 2009 and I was not informed.
Interestingly 2009 is the first year it showed up; that is also the year my chronic debilitating migraines began. My doctor never mentioned it in five years! Not only had he never mentioned it, he NEVER MONITORED IT! I know that because they only show up when contrast dye is used in the MRI. After 2009 they never used the dye on me again until now. If I thought that he was at least keeping an eye on it I might be able to forgive him for not telling me, but he wasn’t. Maybe he was waiting for me to start having seizures to pay attention.
Now the good news is that in all five years that tumor has not grown. It has stayed the same. So chances are it will sit there in my head and behave itself. The part I can’t get over though is being lied to repeatedly! How much brain damage can one doctor withhold from a patient? Did he even notice it? Was he purposefully withholding or just negligent? Either one is not acceptable. Did he do it to keep me on the most expensive MS medication in existence at the risk of my very life? I guess I’ll never know the answer to that question.
I am now determined to never allow this to happen to me again. I also hope that by telling my story it will empower others to question their diagnoses and treatment and as much as it is in your power to be in the driver’s seat of your own healthcare. Here are some things I plan to do better.
- Trust but verify: I did not apply to my doctor the same rules that I apply to my other relationships both personal and professional. It should not have bothered him that I wanted to view the scans. It is not a waste of their time to go over it with you. It is their job and they make a hefty amount of money for doing it. They are not doing you a favor, they are doing their job.
- Don’t let emotions get the best of you at your appointments: Being sick is an emotionally charged experience and we can start to think of or talk to our doctor more like a friend or therapist while trying to get to the bottom of things. I found this especially true when going through stressful times. They of course always ask if you are under any excess stress because stress brings on flare ups. Answer with a yes and don’t get bogged down in the details and get off track. Focus on how it is effecting your body and what you can do about it.
- Make a list and make sure every item is answered or checked off before you leave: That appointment is costing you or your insurance around $350 give or take. They can take the time to explain things without rushing you out. Remember, you likely won’t see them again for months so make it count.
- When you have a new symptom or an especially bad day make a note of it in your phone for your next appointment: I don’t know about you, but I can’t trust my brain to save it for later.
- Get your records: Most imaging centers will give you a disc with your MRI on it along with a copy of the technician’s report. Also you can get your records from your doctor visits and read their notes about you. I found it interesting because sometimes their notes about me were spot on and other times they did not get where I was coming from. It gave me insight into how my doctor sees me and enabled me to clear up any misunderstanding when necessary. I have also found flat out wrong information in my chart and was able to have them fix it.
- Lastly, never let anyone, no matter what their credentials are, talk you out of what the Holy Spirit or your own intuition is telling you: You know your body and you know when something is wrong. Trust yourself and the still small voice of God and insist on proper testing.