Unhelpful Advice

"Hi, this is Betsy with Blue Cross calling from out Health First Program, just to check up on you."
"Didn't you just call me last week?"
"Yes, last week I called you to talk about the importance of staying cool. Today I'm calling to talk about making sure you stay hydrated."




I don't know if that was actually why Betsy was calling because I didn't answer the phone.


Blue Cross had just called me the week before to quiz me if I knew how to take care of myself and it was entirely unhelpful. The two questions I had, whether I would get any pushback for switching over to the more effective new drug, and whether I could be referred to a dietician, she couldn't answer. She just wanted to tell me about cooling vests and send me links where I could order one. I told her I had seen plenty online and new how to order one if I wanted, as an active user of this new invention called the internet.


 I get lots of calls like that.


"Hi, this is Theresa, your personal nurse. I was calling to check in, and also to schedule a time to come by and visit."
"Um, ok. But I thought we had gone over everything last time when you gave me the booklet on how to take my shot. I didn't throw it away."
"Yes, but you are on a scholarship program that allows me to provide three visits a year. It's generously paid for by the makers of Copaxone out of their charitable fund!"
"That and the $5600 a month my insurance pays for my prescription."
"Well, I was just wondering if you had any questions?"
"Just the same one that I asked the other two times you came out to my house. Maybe I'm not asking it right, so let me try it this way: Some drugs are effective immediately, but some need to build up in one's system before they start working fully. How long does it take for Copaxone to become fully effective?
"Oh, I understand. You see, Copaxone doesn't heal you, it just slows down MS's progression. It helps to keep you from getting worse!"
"I know. That's what you keep telling me every time I ask this question. But how long until it starts working to keep me from getting worse?
"Are you getting worse?"
"It's day to day, but not really, not that I can tell. But some people say it takes 6-9 months for Copaxone to kick in and start to help me at all? Is that true?
"Studies have shown that Copaxone is more effective than a placebo for patients who have been taking it nine months."
"But what about at 3 months? Or at 6 months?"
"It works differently for everyone."
"But what are the statistical norms. How long can I expect before Copaxone starts making a difference?
"Are you asking me if Copaxone will take away your symptoms? It's not meant to do that."
"Never mind."


"So tell me about your diet?"
"I eat no dairy, no red meat, low sugar, and usually about 5 grams of saturated fat per day, always less than 10.
"That's good! So many people don't take of themselves, don't exercise, and get fat and immobile!"
"I try."
"How about the shots? Are they hurting any less?"
"No, they are still really painful."
"That's because you are so skinny. If you had more fat on you, they'd hurt less. Maybe eat some cake once in a while--no need to deprive yourself!
"But we were just talking about how diet impacts the progression of the disease? Isn't it better for me to just live with the painful shot than risking the disease progressing?"
"If you're asking about whether Copaxone will heal you, or stop the disease from progressing, it won't. It just slows down the disease."


I actually did have this conversation with Theresa. Twice. I condensed it here, but in real life it took about half an hour both times.


But at least Theresa is pleasant, unlike some callers.


"Hello, this is Dr. Kilker's Office, your Primary Care Physician. We were calling to try to get you to schedule an appointment to come see him."
"You mean the doctor who yelled at me last time?"
"Why did he yell at you?"
"I had called to say I had gone blind in my left eye, and my MRI showed I had optic neuritis. I was calling to get a referral to see a neurologist. He started screaming over the phone, telling me to go immediately to the ER to get an MRI."
"Well, that sounds like a serious issues you needed to get checked out."
"It was, but I already had gotten the MRI he was yelling about. I just needed a neurologist to look at it and diagnosis whether I had MS, and Dr. Kilker wouldn't refer me to one, or even schedule a visit, he just yelled at me to go to the ER to get the tests that I was trying to tell him I had already received."
"So, would you like to come in for a check-up now?"
"No, I would like to find a new primary care physician."


I got a message from my doctor's office on Thursday. I haven't actually called back yet, but when I do, I imagine that's how it will go.


I get so many calls from nurses, doctors, and insurance companies, even the makers of my medicine all every month to ask if I'm ready for a refill and if I have any questions for their pharmacist. They all think they are being helpful, except for maybe the ones who are just trying to sell me cooling vests, or somehow otherwise trying to make money off of my disease.


But if you're one of my numerous friends to whom I owe you a return phone call, it's probably because I'm too busy fending off these outside to have the energy to chat.


I get other "help" too. My dental hygienist was telling me the other day that she heard of a surgery that untwists the nerves in one's neck that is a miracle cure for MS. She admitted it sounded crazy. I agreed with her, explaining that if that really worked, there would be 400,000 fewer people in America with MS and one super rich doctor who figured that out.


A co-worker told me MS was caused by diet coke, and could be fixed by taking a pill, although I couldn't get said pill from my doctor. Or any licensed doctor. I just needed to look into it online. Because the internet has always been right before.


Someone else told me that running had caused me to go blind, even after I explained that cardio exercise has been proven even more effective than the best existing medication in slowing down the progression of MS.


I've heard that too much dairy caused MS, and that I shouldn't use dairy substitutes instead because they are even worse. Some people swear by the Paleo diet's effects on the disease, others say that carbs actually help. Studies have shown that less than 10 g of saturated fat per day produce benefits, but I know people with the disease who don't strictly count and are doing just fine.

Some MS forums say not to eat chicken either, some say white meat is ok.


I get dirty looks sometimes when I admit that I haven't given up gluten, a sacrifice that some people say helped them, but for which there is no scientifically established benefit.


In short, I get a lot of advice on a topic for which everyone is still pretty much just guessing. I don't mind it if it's given in the right spirit from someone close to me, but getting it constantly from near-strangers gets old.


"Just eat healthy, cut out the dairy and red meat, get lots of sleep, plenty of exercise, and don't push it too hard," my neurologist told me. "Take your medicine, and you can still live a full, productive life."


It seems like she's oversimplified things way too much.

She didn't even mention a cooling vest.