Advice from the Community: Awaiting an MS Diagnosis

Waiting is the hardest part. For anyone who thinks they may have MS and is undergoing testing, awaiting results can be scary and downright hard to deal with.

To learn more about how to cope during this challenging time, we reached out on the Facebook page and asked: “What advice would you give to someone who is going through the testing and diagnostic process but has yet to receive a confirmed diagnosis?”

Almost 90 members of the multiple sclerosis community shared their hope and experience. Here is what they said.

“Worrying at this juncture will not buy you anything.”

The time of not knowing can be the hardest on anyone. Without answers, it is easy for a patient to imagine the worst and worry. Many members of the MS community suggested that patients try to stay present as much as possible. Ways to avoid worrying include staying busy with work, watching movies, gardening, and spending time (even virtually) with friends, children or grandchildren.

“Do not get ahead of yourself!”

“Stay in the moment. Do NOT project. Deal with things when they come up and not before.”

“Take a deep breath and relax…It could be nothing, or it could be something. Only time will tell. If you have nothing going on, you will have prevented undue worry and anxiety. If it is something, at least you will know what you are dealing with and can start working on a plan with your doctor to control it.”

“Be kind to yourself.”

For anyone at this stage, a good reminder is to be kind to oneself. Several members of the MS community acknowledged that this stage is the hardest part of having MS, and that anyone going through this will likely be scared. And that is OK. Now is a great time for people to ask for support and comfort to help get through this challenge.

“Hang in there. You do not know what you do not know. Do what you can. Do not put pressure on yourself.”

“Do not be hard on yourself it is really scary. You are allowed to be scared!”

“Believe it or not, you are in the hardest part right now. No matter the news, there will be some comfort in knowing. So, do whatever it takes to distract yourself, forgive yourself for whatever you are feeling, and let yourself do what you need to do to feel better.”

“MS is not a death sentence.”

Several members of the MS community pointed out that an MS diagnosis is not fatal. MS is a manageable disease. In fact, the majority of people with MS experience a relatively normal life span.

“It is not a death sentence. You will actually feel relieved to put a name to something that has been bothering you for a very long time.”

“It is not always deadly.”

“Never let the doctor rush your visit.”

A patient is always going to be his or her own best advocate. For some patients, it helps to bring a friend or family member to an appointment or on a call to serve as an advocate. Regardless of who it is, someone needs to keep track of information and ask any questions. Likewise, a patient deserves to know which tests are being conducted and why. A doctor visit should be the time to receive an education, which can take time. Doctors are not always in the habit of going slow and explaining everything, but it is a patient’s right to understand the process.

“Persistence is key. Ask questions about the tests you are taking. Do not be afraid to get a second opinion.”

“Push for a diagnosis. Do not let them push it back in a wait-and-see mode. The sooner you get on a disease-modifying drug, the fewer flares you will have.”

“Write down every question you can think of.”

“Trust yourself. If you feel uncomfortable with the tests they are suggesting, speak up and ask them if the test is really necessary. Write down all your questions and do not let the doctors brush them off. Ask what every test is for and why they think you need it.”

“See if there is a local MS support group.”

There is so much benefit to going through a tough situation alongside people who understand. Anyone who is going through the diagnosis stage will likely have a lot of questions—and a lot of feelings. It can definitely help to process those feelings alongside people who understand all the same fears and concerns. Reaching out online when you can’t in person within online communities like is a great way to make connections.

“See if there is a local MS support group that can help you navigate through the diagnosis process.”

“Also, try to find a positive MS support group.”

We want to say thank you to everyone who shared for this story. We appreciate your shares.

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