When you’re living with unexplained symptoms like fatigue, tingling, or vision changes, waiting for a multiple sclerosis diagnosis can feel like an emotional rollercoaster. You might go from relief one day to confusion the next, especially if tests raise more questions than answers.
It’s a frustrating process, and one of the most common experiences my clients with MS navigate in the early stages of their journey. Knowing what to expect (and why it often takes time) can help you feel more prepared and confident advocating for yourself along the way.
By the way, have we met? I’m Dr. Gretchen, an MS-Specialized Physical Therapist and founder of The MSing Link – a research-based online program for people with MS, podcast, and book that helps people with MS build strength and mobility. Today, we’ll explore what a multiple sclerosis diagnosis can look like and how to stay proactive while waiting for answers.
For some people, the process happens within a few weeks. For others, it can stretch into months or even years. There’s no single timeline because every multiple sclerosis diagnosis relies on gathering clinical evidence of disease activity that unfolds over time.
Doctors have to confirm that your symptoms are coming from multiple areas of the central nervous system and have occurred at more than one point in time. Because of this, many people go through several rounds of testing, specialist visits, and follow-up MRIs before doctors can confidently make a diagnosis.
While this waiting period can be difficult, it’s also what ensures that your medical team is ruling out other explanations and giving you the most accurate diagnosis possible.
It’s completely natural to feel frustrated by how long the diagnostic process takes, especially when MS symptoms are affecting your daily life. But understanding why the process is so careful can help ease some of that uncertainty.
Here are the main reasons a multiple sclerosis diagnosis often takes longer than expected:
In late 2024, updates to the McDonald Criteria introduced new tools that may help some people receive a diagnosis earlier and with greater accuracy. These changes don’t eliminate the need for careful evaluation, but they do reflect meaningful progress in how MS is identified and confirmed. For more on the latest criteria updates, check out The MSing Link episode below.
Receiving a multiple sclerosis diagnosis involves more than one test – it’s a combination of evaluations designed to build a full picture of your nervous system. Each step provides another clue that helps doctors rule out other possibilities and confirm whether MS is present.
Here’s what that process typically looks like.
This is usually the first step. Your neurologist will take your medical history as well as assess your vision, balance, coordination, reflexes, and muscle strength to identify areas of nerve damage or abnormal function. This can often be done in a single appointment and gives doctors an early sense of what’s happening in your central nervous system.
MRI imaging allows doctors to see lesions or “plaques,” which are areas of the brain or spinal cord where the protective myelin sheath has been damaged. Because MS lesions can appear over time, your doctor may order follow-up MRIs spaced months apart to check for new activity. Each scan helps confirm whether the disease is progressing in a pattern consistent with MS.
If your MRI results aren’t definitive, your doctor may perform a lumbar puncture to analyze cerebrospinal fluid (CSF). They’ll look for specific immune markers called oligoclonal bands that are found in more than 95% of people with MS. The test takes about an hour, though results can take several days to process.
Evoked potential tests measure your brain’s electrical response to stimuli, which reveals whether your nerve signals are moving slower than expected. Blood tests, while not diagnostic for MS, help rule out other autoimmune or infectious diseases. Both tests may take weeks for your medical team to schedule and interpret – but together, they create a clearer picture.
Want to learn more about the tests doctors use to confirm MS? Check out my post on how MS is diagnosed for a walkthrough of the tests involved in each step of the process.
Yes, and it’s one reason why a multiple sclerosis diagnosis should come from a neurologist who specializes in MS. Because so many symptoms overlap with other disorders, an incorrect or delayed diagnosis can happen, especially if testing isn’t comprehensive.
If you’ve been told your tests are “borderline” or your symptoms have been dismissed, I recommend getting a second opinion. MS specialists are trained to spot subtle patterns and interpret imaging in context with your history and neurological findings.
The right team can make all the difference in catching MS early and creating a care plan that helps preserve your mobility and quality of life.
Waiting for answers can be one of the hardest parts of this process. You might feel stuck between wanting to know and fearing what you’ll hear. But there are still meaningful steps you can take while your healthcare team works toward a diagnosis.
Here’s what to do while you wait:
Remember, you don’t have to wait for an official MS diagnosis to start supporting your health. Taking small steps now can help you feel more in control of both your mind and body.
When it’s time for your next appointment, a little prep goes a long way. Coming in with clear notes and questions helps your doctor see the full picture faster and ensures your concerns are heard.
Here’s what I recommend:
Approaching your appointments with confidence helps you stay engaged in your care and ensures your multiple sclerosis diagnosis journey feels collaborative rather than overwhelming.
I know this can feel scary, but please remember that you are not alone. Getting a diagnosis opens the door to understanding what’s happening in your body and finding a supportive plan that helps you move forward.
As an MS-Specialized Physical Therapist, I’ve seen firsthand how the right strategies can restore balance, reduce fatigue, and help you feel stronger in your everyday life. Remember, a diagnosis isn’t the end of your story. It’s the beginning of a more informed, empowered chapter.
Receiving a multiple sclerosis diagnosis can feel heavy, but it also brings clarity. From here, your care team will help you find the right treatments and routines to support your long-term health. I’ve seen countless people with MS rebuild their strength, regain mobility, and rediscover their confidence with the right guidance and consistency.
You are not defined by your diagnosis; you’re defined by how you move forward.
If you’re ready to take that next step, my online wellness program, The MSing Link, can help. It’s designed to empower people with MS to feel stronger and move better through science-backed strategies and MS-specific exercise.
And if you ever have questions or need support, reach out to me anytime on Instagram @doctor.gretchen – I’d love to hear from you!
Do you find yourself unable to take on daily activities without the fear of bowel symptoms taking over? Let's work through it together! See my complete MS specialist guide to exercises and treatments for bowel issues here.
As a physical therapist & Multiple Sclerosis Certified Specialist, I have spent the last 10 years teaching people with MS how to feel more confident & empowered through MS-specific exercises and strategies.
If you want support and encouragement, plus a healthy dose of tough love, come follow me on Instagram (@doctor.gretchen) or on YouTube @DoctorGretchenHawley. It's where I share daily tips, tricks, and information about new offers — plus, you’re bound to feel more empowered, hopeful, & motivated after watching each post and video!
Questions? Email me at Hello@DoctorGretchenHawley.com
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Dr. Gretchen Hawley's The MSing Link offers a comprehensive guide to taking control of your MS symptoms and improving your mobility through MS-specific exercises and strategies.
6000+ copies sold in over 13 countries!
