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Multiple sclerosis (MS) is unpredictable and can lead to symptoms that require care outside of normal working hours.
If you live with MS, you may sometimes find it challenging to get immediate in-person assistance for your symptoms. You might need to seek care after hours by using telemedicine, visiting an urgent care clinic, or, in emergencies, going to the nearest hospital.
Many people with MS are also turning to virtual doctor’s visits in order to avoid public spaces during the COVID-19 pandemic.
We hosted a chat in the MS Healthline app to ask for tips on navigating MS after hours and virtually. Here’s what the MS Healthline community told us.
Under new insurance rules related to the COVID-19 pandemic, more types of virtual care are being covered by insurance companies. That means it may be possible to use telemedicine in new and unique ways.
The MS Healthline community had a number of tips for using virtual care. Sheri Dinges, diagnosed with MS in 2004, suggests:
- Share information early. Consider sending your list of questions or symptoms to your doctor ahead of time. If you have concerns about your gait changing, see if you’re able to record and send a video to your doctor before your appointment.
- Check your devices. Set an alarm on your phone 1 hour before the appointment and double-check that your phone or computer is charged. Be sure to take your device off mute or silent mode so you’ll hear alerts for the call.
- Get situated. Use the bathroom beforehand in case it’s a long virtual visit. Make sure the space you’re in is quiet, which may include turning off the TV and putting your pets into another room.
- Keep a list. Write down any questions that you want to cover during the appointment. Another MS Healthline app user recommended making a list of any recent stressors, symptoms, or missed doses of medication.
- Have your medication and supplements nearby. This can help guide the discussion with your doctor in case there are any medication changes or prescription renewals.
- Come prepared. Read over your questions before the visit, have access to your calendar or schedule book for future appointments, and keep a pen and paper handy to take notes.
“I’ve found that the more prepared I am, the better [the appointment] goes and the more information I walk away with. Plus, I can definitely tell that the doctor appreciates it too!” said Dinges.
Some MS Healthline community members said they were actually more comfortable using telemedicine compared with in-person visits. “Sometimes when you aren’t face to face with the doctor, you can ask questions that may be a little embarrassing to ask otherwise,” said one app user.
“Even if it’s a short message from my neurologist or a weekly counseling session with my therapist, telemedicine is the best,” said ChucklesNapoleon, diagnosed with MS in 2019.
When a urinary tract infection (UTI) sets in, it’s understandable to want to seek care immediately. Drinking lots of water to stay hydrated may help with more minor UTIs when care isn’t immediately available.
From Elizabeth McLachlan, diagnosed with MS in 2004:
The reoccurring problem I seem to have when I need care after hours is if I develop a UTI over the weekend. I’ve done a few different things to handle this:
- Call the doctor’s office for after-hours services. I have been prescribed an antibiotic to help over the weekend if there is severe pain.
- Go to urgent care. [During the COVID-19 pandemic, this may not be recommended for everyone.]
Seeking care after hours, whether it’s at an urgent care center or using telemedicine, may help if your symptoms are confusing and you’re not sure if they’re related to MS.
“I thought my fatigue, aches, and congestion were part of MS but via telehealth, my neurologist could see it might be more and scheduled a COVID-19 test for me the next morning. Results were negative, [but] without telehealth I would not have gotten tested and I would have continued to push myself despite my symptoms.” — Namira, diagnosed with MS in 2015
Checking in on your mental well-being is another important part of caring for yourself. In some cases, you may be able to use virtual care for therapy visits. Talk to your insurance provider for more information.
The American Psychological Association also has a resource that outlines state-by-state telehealth coverage rules during the COVID-19 pandemic, which may help you understand what insurance companies are allowed to cover where you live.
If you’re having thoughts of harming yourself, know that help is available to you. If you’re experiencing thoughts of suicide, the National Suicide Prevention Lifeline is a free and confidential emotional support resource that’s available 24/7.
This Suicide Prevention Resource Guide provides more information about where to get the support you need.
Sometimes, the best option may be to just wait it out and take care of yourself in the best way you can. Members of the MS Healthline community suggested getting plenty of rest and reading before bed if you’re having trouble sleeping.
“On good days, I prepare easy to heat and eat meals and put them in the freezer for those not-so-energized days.” — Jo, diagnosed with MS in 2007
If you find yourself needing assistance for MS after hours, you may not initially know what to do. Being prepared for this situation may help you manage your symptoms until in-person care is available.
There are many ways to make the most out of remote care. A virtual doctor’s visit won’t provide all of the same resources as an in-person visit. If your symptoms are severe and require immediate medical attention, go to urgent care or the hospital.
Find a community that cares
There’s no reason to go through an MS diagnosis or long-term journey alone. With the free MS Healthline app, you can join a group and participate in live discussions, get matched with community members for a chance to make new friends, and stay up to date on the latest MS news and research.
The app is available on the App Store and Google Play. Download here.