Welcome, My MSAA Community, to our Ask Me Anything with Dr. Barry Singer! We are excited to have Dr. Singer joining us to answer YOUR questions.
Barry Singer, MD, is the director of The MS Center for Innovations in Care at Missouri Baptist Medical Center in St. Louis, MO and is an assistant professor of Clinical Neurology at Washington University School of Medicine. Dr. Singer has been an investigator in more than 25 multiple sclerosis trials (Phases I to III) focused on new therapeutic options. He continues to publish peer-reviewed articles, present posters and lecture globally on multiple sclerosis. Dr. Singer is also a member of MSAA’s Board of Directors.
For the next hour, please feel free to ask Dr. Singer your burning questions about multiple sclerosis as a reply to this post. Don’t forget to keep refreshing the page to see the latest questions and responses.
Bring on the questions!
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Well-balance healthy diet best. Lots of fruit/veggies are great; help with constipation. Adequate fluid intake key. Lean protein. Salmon and dairy are good sources of Vitamin D.
Many specific diets have been advocated such as Wahls diet for MS. Most of these diets are overall healthy approaches. However, no diet has been proven in clinical trial to change the disease course. Best to talk to your doc before considering a new diet.
Secondary progressive MS (SPMS) is when someone transitions from relapses with recovery to slow progressive disability such as worsening leg weakness over time. Early with SPMS can still be associated with relapses.
The team here at MSAA is truly excited about this first-ever AMA on our My MSAA Community!
We also received some great MS questions from our members throughout this past month, so be on the lookout for us inserting them into the AMA periodically. Please note that we may have edited them for clarity and consolidated them into common topics.
There is a concern regarding gadolinium MRI contrast remaining in the brain from repeated MRI scans. However, no clear toxicity or long-term neurological problems have been noted. Contrast is very useful to look for active MS lesions on the brain and spinal cord.
Last night Ocrevus was approved for MS, both PRIMARY PROGRESSIVE and relapsing forms of MS. Given by infusion every 6 months. This is the first treatment approved for primary progressive MS: a huge breakthrough.
Cognition is a tough problem with MS. 50% of people with MS can have short-term memory loss and multitasking problems. Organization is key: email folders, smart phone, keep lists/notes. Occupational therapy can help.
Fatigue may be related to MS inflammation. Immune cells secrete cytokines, chemicals that can cause fatigue. Lesions in the brain may contribute directly to the feeling of tiredness. 90% of people living with MS are affected with fatigue.
As above. Strategies to address fatigue include working on good sleep, energy conservation (physical activity in AM), and naps. Meds that help are amantadine, amphetamines, modanfinil and armodafinil.
Good old prunes/prune juice works. Miralax seems to work for lots of my patients. LOTS of water as you mentioned. If trouble evacuating, suppositories can help.
I have PPMS and started to lose the enamel on my teeth. This didn't start to happen until the second year I was taking Aubagio and Amprya. I also am taking meds for Trigeminal Neuralgia.
Aubagio and Ampyra are not associated with specific dental issues. Great news: OCREVUS was approved last night as the first treatment for PPMS (primary progressive MS). Reduced the risk of disability progressive over 2 years.
Ocrevus will be given in an infusion center. Your neurologist can coordinate a designated center for the infusion which can take 2.5 to 3.5 hours and proceeded with steroids intravenously.
A low dose of methylprednisolone (steroid) is given in the vein prior to Ocrevus infusion to minimize risk of serious infusion reactions. The steroid dose is one tenth of typical dose for relapses.
Can you comment on the tumor risk that seems to be associated to Ocrevus?? I've been wanting to switch but don't like choosing between a risk of PML and a risk of tumors.
No PML (brain viral infection) occurred in the clinical trials of Ocrevus, but other treatments that deplete B immune cells have been associated with rare PML (generally with immunosuppressive medication exposure). A higher rate of cancers was seen on Ocrevus vs. placebo or Rebif although still very infrequent. Unclear if Ocrevus truly causes malignancy or a random finding in the trial. The prescribing information recommends routine breast cancer screening.
A higher rate of breast cancer was seen on treatment with Ocrevus than Rebif or placebo. 6 total cases of breast cancer occurred in the phase 3 clinical trials. It’s very important to discuss potential risks of any treatment directly with your doctor.
I take alot of vitamins and supplements (herbs), as I've always been a health fanatic. Do you know of problems with negative interactions of vit's / herbs, with Copaxone?
Closer to 15 meds now! Excellent question. No clear predictor of which medication would be best suited for an individual patient. MS doctors have been looking for a blood test (biomarker) to help us pick the right medication. For now, medication is chosen based on the benefits and risks depending on your MS disease activity level and prognosis.
Insomnia is common due to multiple reasons such as anxiety and restless leg syndrome. MS symptoms such as muscle cramps and frequent urination at night can cause insomnia.
Without medications, consider "white noise" in background such as rainfall, ocean noise. Gabapentin can sometimes help. An ENT evaluation is recommended to make sure not an ear problem.
High doses of biotin has some benefit on MS disability progression in an early clinical trial. A larger trial will answer whether treatment is truly useful. Biotin supplements can interfere with blood tests such as thyroid test so tell your doctor if you are taking Biotin.
Can MS cause extreme itching (arms and legs) which can last days or weeks at a time without any hives, etc? Drug, lotions, and other allergies ruled out. Gabapentin helped, but my neurologist doesn't think it was MS related.
Both common conditions. Not sure if restless legs syndrome (RLS) is actually more common in people with MS. Treatment like ropinirole help a lot. Since iron deficiency can cause RLS, good to have your ferritin levels checked.
Do you know of any treatment for MS-caused Nystagmus?? I've read that Gabapentin can help but don't know at what dosage. I already take Gabapentin for neuropathy and its not making any difference in my Nystagmus.
Typically, gabapentin 300 to 600 mg every 8 hours is used for nystagmus. The Alzheimer's medication Namenda is also sometimes used, but actually worsened memory in people with MS.
Sarcopenia is the loss of muscle bulk due to normal aging. MS can often cause muscle weakness. MS usually does not cause dramatic loss in muscle bulk, but only expected loss of bulk due to disuse. Exercise is important to maintain strength.
Ive been wondering if I might be better off not taking copaxone...seems like my symptoms have worsened over the past few months. Also, I'm not a great believer in traditional meds, so I'd love to just try alternative medicine strategies. Your thoughts on that?? Btw, I can't afford to see my neurologist .
Treatment with a disease-modifying therapy (DMT) is the only known way to change your disease course. Stopping treatment could put you at risk of more disability. If your disease is worsening, call your neurologist to explore options. Explain your financial situation to your neurologist’s office staff to see if a solution can be found so your medical needs can be made. Discuss alternative treatment options with your doctor, but would consider these options possibly complementary rather than replacing your DMT.
Not really. However, hot flashes with menopause and heat intolerance with MS can overlap. Many overlapping menopause and MS symptoms including fatigue.
Vitamin D is very important. Higher vitamin D levels is associated with less relapses, less MRI activity. I aim for 50-100 mg/ml on a blood test. Most patients need at least 4,000-5,000 IU daily.
One last question...I take prednasone occasionally to ease my symptoms...which I don't like, but it definitely makes them go away (temporarily). How dangerous is prednasone?
Chronic prednisone (oral steroids) can cause elevated blood sugar (diabetes), osteoporosis, cataracts and glaucoma. Generally, high dose steroids with IV or orally are only used for 3-5 days at a time for a significant relapse, not to ease chronic symptoms.
Everyone with unanswered questions - we are currently experiencing some technical difficulties. We are working on this so you can get your questions answered!
Thank you to Dr_Barry_Singer and everyone who participated and asked questions! We do apologize for the technical difficulties and if your question was not addressed, we will try to follow up and address these additional topics in the future!
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