I’m admittedly writing to you from a very anxious place. I knew something was wrong when my vision began to come and go at random times and I began to feel pins and needles in my right arm. And when my primary care physician diagnosed me with multiple sclerosis (MS), palliative care was my first thought. I was completely devastated. I had no idea where to begin with my next steps.
Though my doctor specified that it’s in the early stages, I’m still wondering about worst-case scenarios. I feel like I’m still able to do everything I was doing before my diagnosis. So I’m wondering if I really need to pursue palliative care for MS.
I know it’s probably difficult to give me a straight answer without knowing my full medical history, but I can tell you that I don’t feel like I need extra assistance right now. Then again, who knows what could happen tomorrow? Can you give me some insight?
Dear Anxiously Diagnosed,
Thank you for reaching out. It’s understandable to be in a state of shock and worry over your recent diagnosis, but know that you have options. If you’re thinking you may need extra care now or sometime soon, Crossroads Hospice and Palliative Care offers many palliative care resources to help you better understand how we may or may not be able to help you.
To answer your overarching question: No. An MS diagnosis does not automatically mean palliative care is initially needed. To be even more specific: whether or not you need palliative care for multiple sclerosis is entirely dependent on how far along your disease progress is. As you get further along with MS, palliative care can definitely help manage and alleviate your symptoms and should be considered as a viable option to improve your quality of life.
With that said, it seems as though some of your anxiety stems from a common misunderstanding of what palliative care is. At Crossroads, we offer both palliative and hospice care. While they have similarities, they are not the same thing. Both have a common goal of managing a patient’s symptoms and providing the overall support they need for the highest possible quality of life. Hospice care is reserved for patients who have been diagnosed with six months or less to live if their disease progression follows its normal course. Palliative care does not require a terminal diagnosis and can be delivered concurrently with aggressive therapies and therapies that are aimed at cure.
Since you mentioned your MS still in the early stages, and you feel fine doing the things you’ve always done, you’re probably not in need of that level of assistance at this point in time. Though you are right that there may come a day that you will need it, it might not be as soon as you think. However, you are always welcome and encouraged to reach out to a palliative care professional at any time to obtain more information. This will allow you to make the best choice for you and your condition.
There are different ways you can manage your MS symptoms on your own in your daily life. Keep up with daily exercise and a healthy diet to help preserve your energy throughout the day, but don’t push yourself to do things that require too much energy. Don’t be afraid to ask loved ones to help you out — even if that just means being more understanding when you’re not able to do things as quickly and easily as you could before.
Keep an eye out for some of those symptoms you mentioned, especially a worsening in your vision, increased tingling and numbness, or increased fatigue and weakness. If things start to get worse or you notice a decline in your everyday motor functions such as difficulty in walking or impaired coordination, don’t hesitate to reach out to Crossroads to see how we may be able to help.
DeAnna Looper, RN, CHPN, CHPCA
Chief Compliance Officer
Crossroads Hospice & Palliative Care
For more information on palliative care programs and services, give us a call at 888-564-3405
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