What I Wish I’d Known: Patient to Patient Advice About MS
Veteran MS patients share their invaluable knowledge on treatment plans, finding a community, handling flares and so much more.
It’s totally normalthat a multiple sclerosis (MS) diagnosis may come with anxiety, concern, and很多问题。毕竟，它是一种终身自身免疫性疾病，而且有许多不同的情景如何进步。与你的医生交谈关于你拥有的女士类型以及现在的日常生活是什么意思，以及长期来看，是一个很好的第一步。但你知道什么也是宝贵的？学习来自鞋子的其他MS患者，可以对从心理健康到讲述朋友和家庭治疗的所有人的洞察力。（加上，他们是最好的欢呼队！）
加班,你肯定会开发自己的支持ystem of fellow MS patients. But, in the meantime, we spoke to a bunch of people who were more than happy to share what they wish they had known (and done!) when first diagnosed with MS:
我希望我知道的是...治疗
慢慢来。“When I was first diagnosed, I didn’t know how steep a learning curve it would be for those first few months. For those of us without medical backgrounds, it can take a little while to get 'up to speed' and that’s ok,” says Alexandra Levin, 37, of New York City. “It’s OK to take your time, read and digest information, and talk to a number of doctors as you learn about the disease, medication options, and what it all means for you. What’s most important is finding the right treatment option that works for you. I am on a twice-a-year infusion schedule, which gives me the freedom to focus on my career and my family.”
你不必解决。“Remember that everyone has a different experience and journey with MS and the meds. You will most likely need to try more than one medication; that’s normal,” explains Ellie Shannon, 33, who lives in Victoria, Canada. “Don’t put up with extreme discomfort if the side effects are intolerable. It's not worth it and there are other options. The treatment shouldn't make your life a living hell or feel worse than the actual disease it's supposed to be protecting you from.”
You’re stronger than you think.“I wish I had known how to emotionally prepare for treatment,” says Susan O’Connor, 50, of Ventura County, CA. “I wish I knew that the shot that was shoved in my lap upon my first appointment with my (then) neurologist—‘NO WAY am I giving myself a shot!,’ I thought at the time—was going to be the success that it has proven to be for me for the past 20 years.”
药物不是敌人。“You aren’t showing the disease who is boss by rebelling against the medicine,” says Channing Barker, 30, of Springfield, AR. “Upon diagnosis, I felt really empowered because I was introduced to a woman who had created a full life on the disease-modifying treatment I was on. Having that role model of what could be if I stuck to taking my medication was crucial.”
Options are always improving.“我会告诉我的年轻人希望能够获得新的治疗，”达拉斯·德克萨斯达拉斯谢尔顿梅斯梅斯·梅斯·梅茨说。“当我第一次被诊断时，我现在正在服用的疾病 - 修饰治疗，因为开始这种药物以来我已经提高了。”
What I Wish I Knew About…Doctors
Chemistry is important.“Unless you absolutely love your doctor from the first meeting, I suggest looking around until you find a doctor that completely understands what you’re going through as an individual,” says Cory Martin, 40, of Venice, CA, and author of the memoir爱病了. “Voice your concerns, ask questions about all the various treatments, tell them how you want to deal with this disease, and ask how they envision your treatment. Find someone who can be a partner and help guide you in this journey. I’m so glad I sought a second opinion because my first doctor was all wrong for me. I now consider my MS specialist a friend who has my back in every situation.”
寻找一个伟大的神经科医生。“有the right neurologist is very important,” says Diane DeVillers, 64, of Eugene, OR. “A neurologist knows way more than a primary doctor to help you cope with the disease. But even with your neurologist, you have to find the right one who makes you feel comfortable and knowledgeable about your type of MS.”
Ask all the questions.“你必须在这些约会中为自己倡导，”巴克说。“这意味着在必要时预先研究药物改变并跟上MS研究的最新数据。在您获得答案之前发送电子邮件或通话 - 您有时会犯错误。询问你认为'愚蠢的问题。相信我，他们不是。“
Rely on yourself most of all.“医生对我的整体成功至关重要，但他们每天都没有，”梅茨提醒。“你必须在每天为自己找到自己的力量，并与你的医生诚实地与你的疾病如何进步沟通。”
What I Wish I Knew About…Relapse/Flares
触发器可以有所不同。“When I was first diagnosed with MS, I spent hours searching the internet for information about the disease. I began to develop an idea about how my MS would progress. Later, I learned that what causes a relapse in one person may not in someone else,” says Metz. “For example, I struggle in heat, but I have met hundreds of people living with MS who struggle in the cold. I wish I would have known that my journey with MS is my own unique experience.”
......尽可能持久的结果。“那些复发剩余的MS的人可以在复发过程中有变得更糟的症状，但是当他们休息时，症状会消失，就像四肢，眼问题或眩晕的弱点一样。但是，随着渐进的MS，当我在右腿上有弱点和瘫痪时，它是永久性的，“救助者解释道。
你会坚持下去。“Yes, they are scary. Yes, you will survive and you can get through this,” says Shannon. “If at all possible, find someone you trust to talk to about what you are experiencing. Be it a friend, family member, doctor, counselor, mentor from the MS Society, or stranger on the Internet. It’s important to have people you can reach out to so you don’t feel so alone, even if they don't fully understand your situation.”
Worrying isn’t always productive.“这种疾病是令人难以置信的不可预测的，有时候很难离开你的脑袋。我希望我没有花这么多时间担心什么，如果我醒来，不能走路一天怎么办？如果我的认知恶化怎么办？我浪费了很多能量担心可能发生的事情，而不是专注于我在那一刻做什么，“马丁说。“我在过去的十二年中发现了什么是一夜之间没有发生任何事情，如果你害怕或恐惧的事情确实发生了，你就会通过它。我比我想象的更强大，更有弹性。“
Don’t be afraid to ask for help.“你必须让别人帮助你，当你失败时，你必须让他们知道你什么时候需要帮助，”提醒巴克。“让你的朋友在你不能感受到你的腿时开车。告诉你的教授，你正在挣扎。比你想象的更宽容。当你失败时，找到一个在你身上的好朋友;那是如此，这么重要。“
我希望我知道的是......我自己
你不需要对自己很难。“由于认知问题，你被允许的午睡，与其他人一起学习，在周五晚上10:30睡觉，少吃这一点。你不必参加每一个活动，“巴克说。“你正在学习绳索，有时它会变得艰难，但你必须与这种疾病一起工作，而不是反对它。”
专注于心理健康。“你需要一个积极的人的支持制度，那些创造有毒情绪的人放弃了你的能量，”救世者说。“我的伴侣是我的守门人。他帮助我有积极的态度。他知道，只是通过看着我的脸，当我需要躺下而何时让我在夏天保持凉爽。保持良好的心理健康就是一切。他们说，70％的女士得到抑郁症。我发现锻炼和保持自己忙着帮助我的精神状态，分散我的背痛。“
Life will go on—and be good!“There is a lot of fear when diagnosed that the plans you have are now impossible to reach, but that is not the case. I work at a great company in a job I love. I am married to my best friend and we have a 5-year-old daughter,” says Metz. “Does MS make life more difficult? Yes. Does it make enjoying life impossible? No.”
You are resilient.“I wish I knew that this would make me stronger as a person and better able to cope with whatever comes my way. As my partner says, I’m a badass boss that can handle anything,” says Shannon.
