In a TikTok Live session on 1/10/25, Dr. Samantha Roman(@ThatMSdoc on TikTok), a leading MS neurologist and MS patient herself, addressed a wide range of questions from her audience. Here's a summary of the questions and answers from the event.
*****This is for informational purposes only and is not intended to diagnose, treat, or provide medical advice. Always consult a healthcare professional for medical guidance and treatment options related to multiple sclerosis or any other health condition.
1. Is there a connection between MS and mono (EBV)?
Yes, there's strong evidence linking Epstein-Barr Virus (EBV), the virus that causes mono, to an increased risk of MS. One theory suggests the virus resembles myelin, so when the body makes antibodies against EBV, it might mistakenly attack the myelin. Over 95% of people with MS have EBV antibodies, even if they were never diagnosed with mono. Vaccines are in development but aren't available yet.
2. What are your thoughts on Kesimpta?
I think Kesimpta is a fantastic medication. It's a B-cell depletor, similar to Ocrevus, but it's administered monthly under the skin instead of through an IV. It's highly effective and well-tolerated, and people love that they don't have to visit an infusion center.
3. Is dysautonomia common in MS?
While I never say never, dysautonomia is not common in MS. It can be tough to manage, often requiring compression stockings, increased salt and water intake, and physical therapy.
4. What is PIRA?
PIRA stands for "Progression Independent of Relapse Activity." It refers to the gradual worsening of symptoms without new relapses or lesions. This could be due to "smoldering" inflammation within the brain and the body's declining ability to compensate for damage as we age.
5. Is noise sensitivity a symptom of MS?
It's not a common symptom, but MS may cause ringing in the ears or dizziness. Any new symptom should be reported to a neurologist for evaluation.
6. How do you know if your symptoms are MS?
It's difficult to know for sure. MS symptoms overlap with many other conditions. Relapses often develop over days and improve over weeks, with or without steroids. Diagnosis typically requires MRI scans and a detailed clinical evaluation.
7. Does testosterone impact MS in transgender men?
Sex hormones, including testosterone and estrogen, definitely play a role. Low testosterone in men is linked to worse MS outcomes. Similarly, lower estrogen during menopause can worsen symptoms. We are still learning how hormone therapy impacts MS.
8. Are styes common in MS?
I'm not sure if styes are common in MS. If they persist, it's worth discussing with a neurologist.
9. What research is there on smoldering MS?
There's ongoing research, particularly into BTK inhibitors, a new class of medication which might become available in a few years. Current medications aren't very effective for smoldering MS because they don't reach inflammation within the brain.
10. What is Lhermitte’s sign?
Lhermitte's sign is an electric shock sensation down the spine when bending the neck forward. It suggests an issue in the cervical spinal cord and is commonly associated with MS but not exclusive to it.
11. What are your thoughts on Ocrevus?
I'm on Ocrevus myself. I chose it because it's highly effective and only requires infusions twice a year. It's convenient, and I haven't had issues with side effects when properly monitored. However, regular lab monitoring is necessary in order to ensure safety on this medication. The main long-term risk is infections.
12. Does optic neuritis cause optic nerve thinning?
Yes, optic neuritis can cause thinning in the optic nerve, which can be detected on OCT scans. Even without optic neuritis, people with MS can develop optic nerve thinning over time.
13. Are you in any Facebook Groups?
Yes, I have my own private Facebook group named Living and Thriving Beyond MS a positive, supportive space for MS patients managed by me. Everyone is invited as long as their goal is to thrive and help others do the same.
14. Should I take Vitamin D2 or D3?
Vitamin D3 is better. It's more bioavailable and easier for the body to use. For people with kidney disease, D3 or the active form of vitamin D, calcitriol is recommended.
15. Are MS patients more likely to have other autoimmune diseases?
It's not uncommon for people to have more than one autoimmune disease. I've seen MS patients with lupus, rheumatoid arthritis, and Crohn's disease. Interestingly, Tysabri can treat both MS and Crohn's disease, while the S1P receptor medications like Gilenya are also FDA approved for ulcerative colitis.
16. What are treatments for MS-related pain?
Pain from MS is typically nerve-related or muscle-related. Gabapentin and Lyrica work for nerve pain, while Baclofen and Botox help with muscle spasticity. Facial pain or trigeminal neuralgia has a variety of treatments, including oxcarbazepine. Headache pain can be managed in many different ways.
17. Are there medications to repair damaged nerves?
Currently, no remyelination therapies are on the market. Some, like PIPE-307, are in clinical trials but are still years away.
18. Do medications improve MS symptoms?
Disease-modifying therapies prevent future relapses but don't treat current symptoms. Symptom management involves separate treatments like physical therapy, stretching, or medications for pain and spasticity, among other things.
19. Can you have MS with clear MRIs?
No, MS symptoms come from lesions on the brain or spinal cord. If your MRI is clear, it's important to explore other possible causes to explain your symptoms.
20. What are your thoughts on the carnivore diet for MS?
There are certainly nutrients in animal products (e.g. meat, eggs), like choline and carnitine, that support cognition, which may be more difficult to get for people following a vegan or vegetarian diet. The carnivore diet is a very extreme form of an elimination diet, but some people feel great on it. I believe the best diet for any individual person is one that is sustainable for them to stick with and focuses on whole, unprocessed foods and limiting added sugar.
21. Does MS cause emotional or behavioral issues?
MS is associated with higher rates of anxiety and depression. It's unclear if this is due to brain changes or the emotional burden of the disease. I always recommend therapy and mental health support for MS patients who are struggling with mood symptoms.
22. Can spasticity make joints lock up?
Not the joints themselves, but tight muscles from spasticity can make limbs feel stuck or straightened.
23. Is it safe to get pregnant on Kesimpta?
It can be safe if timed accordingly. According to the prescribing information, you should wait six months after stopping the medication to try to conceive. In reality, most MS doctors have varying recommendations, including continuing the medication until you find out you are pregnant. Ocrevus is also safe if timed correctly before conception. Please refer to your neurologist for their specific recommendations for your case.
24. Should MS patients see a psychiatrist or therapist?
Honestly, I think every MS patient should see a therapist at some point. Mental health is an essential part of managing MS and so many of us do have struggles with mental health, especially early on in the diagnosis process.
25. Can MS cause seizures?
It's rare, but possible, especially if lesions are in the brain's cortex. I have only ever seen this in people with long-standing multiple sclerosis for many years.
26. Do you have plans to create MS supplements?
Yes! I'm working on creating a custom multivitamin for MS. but we've already launched really tasty MS sleep gummies and plan expand with the ultimate goal of creating a custom MS formula with neuroprotective ingredients like alpha-lipoic acid, CoQ10, omega-3, and magnesium. This would also allow people with MS to cut down on the number of different supplements they have to buy each month and number of pills to take every day.
27. Is there a cure for MS?
Not yet. Treatments can control the disease and prevent new symptoms, but we don't have a cure that eliminates the need for ongoing treatment.
About Dr. Sam Roman:
Dr. Sam Roman is a Johns Hopkins-trained neurologist and MS specialist who was diagnosed with MS during medical school. Combining her medical expertise and personal experience, she is dedicated to empowering people with MS through education, compassion, and innovative solutions.