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Transcript: Ask Me Anything with Dr. Annette Okai

Welcome, My MSAA Community, to our Ask Me Anything with Dr. Annette Okai! We are excited to have Dr. Okai joining us to answer YOUR questions about Relapse Management.

Annette Okai, MD is a neurologist in Dallas, Texas and specializes in multiple sclerosis. She is affiliated with Baylor University Medical Center.

For the next hour, please feel free to ask Dr. Okai your burning questions about multiple sclerosis relapses as a reply to this post. Don’t forget to keep refreshing the page to see the latest questions and responses.

Hit us with your questions!

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65 Replies
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Welcome everyone

Excited to be a part of the community

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Thank you Dr. Okai for being with us this evening!

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Thank you. Great to be here

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How do you differentiate relapse from progression or what I call symptoms creep?

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A relapse is a new symptom that occurs or a sudden increase in prior symptoms that have been stable. This is in the absence of fever, infection, fatigue or high stress

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What about new symptoms that do not improve (facial numbness/drop) after steroids? Is there a way to distinguish relapse from progression in progressive forms of MS? Thank you for your time, Doctor.

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Some symptoms may not improve, but are stable over time. A sudden worsening in the absence of other external factors indicated above, may indicate a relapse. Most progressive forms of MS do not experience relapses but just increase in disability over time

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If most progressive forms do not experience relapses, is there a standard for prescribing steroids? Thank you again for your time, Doctor.

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There is no standard for prescribing steroids. that is based on the physician discretion.

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Can MS make bowel movements smaller?

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No. not sure what you mean by smaller. But MS can slow down BM in some patients

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How quickly does one need to begin treatment in order for steroids to be effective in treating a relapse?

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The earlier the better is key. Ideally in a day to a week. Most symptoms will eventually improve

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Then is there a disadvantage to waiting out the symptoms, and not initiating steroids

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Yes, there is a disadvantage to waiting out, as the effectiveness of steroids is best when given early in the relapse

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A question from some of our MS clients - how long does a relapse typically last?

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Depending on the severity of the relapse, they can typically last from days to weeks. There are instances where post recovery can take longer and patients may need rehab services for longer periods of time

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Do steroids prevent damage to the body when used for a relapse or do they only shorten the duration of the relapse?

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Steroids are normally to shorten the duration of the relapse

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What kind of disease activity or progression is "acceptable" or at what point should one consider changing a DMT?

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Great question. We are aiming for minimal or no disease activity when treating patients. Multiple relapses and MRI changes is a sign that you may not be responding as well to the current therapy. Your health care provider can decide if some activity is acceptable.

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When you have a relapse, is it possible that you end up with a disability that the steroids doesn't correct

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Yes that is possible. The recovery from a relapse may not be complete and some residual disability may occur

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When being treated for relapse with steroids. How does doctor determine 3 days vs. 5 days?

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This is due to the doctor's preference and knowledge of your history.

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Does exercise slow progression of disease? I was a runner for 18 years, and now I am too unstable to walk for exercise without walking sticks.

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Exercise is great and has been shown to stabilize and help some MS symptoms. It does not slow progression of MS and medication does.

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Another question from some of our MS clients - what is the difference between a pseudoexacerbation and a true relapse?

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A pseudo relapse is when there is worsening of prior symptoms in response to fever, infection, fatigue or stress.

A true relapse is a new symptom or worsening of old symptoms in the absence of fever, infection, fatigue or stress.

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With relapse, is it possible that MRI is needed to see if changed has occurred

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Sometimes a MRI is needed to assess for any changes associated with the relapse

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Joc-42 I was a long distance bicyclist right up until the day I went numb. Had 2 courses of steroids while they were running tests to find out what was going on. They reduced the numbness tingling. Now over 18 months later, I have to walk with a cane and then only short distances.

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A question from Missyoregon - Can you have progression of the disease without having a flair? My mri doesn’t show any new lesions but I continue to have spasms and muscle weakening in my left leg.

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Yes there can be progression without a relapse. There can also be symptom fluctuation that may not be disease progression

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Are periodic MRIs necessary if there seem to be no actual relapses? It seems that damage/new lesions can accumulate without symptoms, possibly showing the need for a new DMT.

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Periodic MRIs are necessary to monitor disease activity and medication effectiveness. There may be MRI activity without symptoms and treatment options may need to be discuss based on that as well.

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Is it possible to have disease progression without any new lesions?

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Yes. there can be disease progression without new lesions

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I was told via an MS counselor that progression of disease usually doesn't happen after the later 60s. I was diagnosed at age 69 and now am 76. I've been on copazone and have had no relapses. Is it true that one is more stable in later years?

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MS is unique in each patient. While some may be stable in later years, there are others that have some activity

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Regarding this, do you generally prescribe DMT's for older patients who don't show much relapse activity? There seems to be debate about this.

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There is an ongoing discussion as to treating or not. If there is activity in the later years, I do tend to treat older patients

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Hi Emily! I want to know if it's normal if sitting for like about 10 minutes in the car for my legs to quickly fall asleep? When I situate them it stops. But it just feels funny. ☺

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Yes. it is not uncommon. Prolonged positions, and for you 10 minutes, can cause those symptoms

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Thank you. I just feel as if I can't sit for to long. I was paralyzed in November 10, 2015 and I didn't get out of the hospital until January 12, 2016, and every time my legs fall asleep even if it's just for a little bit, it just makes me feel and think that I might be paralyzed again and it's not an experience I want to have again.

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How does doctor determine your progression when MRI remains same but body is different?

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Progression can also be determined by clinical presentation and exam

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Question from more of our MS clients - what are some common symptoms of a relapse?

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common symptoms can be blurred or double vision, weakness or numbness and tingling on one side of the body, vertigo or dizziness, or difficulty with speech. These are common and can vary.

Most symptoms have to be continuous for more than 24 hours to be considered a relapse

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I was healthy, very active senior citizen, riding bicycle up to 200 miles a week, swimming laps and walking after dinner. At 68 yrs, went numb, diagnosed MS 6 months later. 20 plus white spots in brain, lesions T2-T3. Doc calls spine lesions MS. No changes or new spots in brain so he won't diagnose those. It's been over 18 months, and he won't tell me a stage. Is that common, to not be told a stage? My symptoms are being treated with Gabapentin, Baclofen, Modafinil. As the just are lessening the symptoms, not stopping them and we've gradually increased the dosage. At almost 70 yrs, I want to have the best quality of life for whatever I have left, do you think I should consider a DMT? Doc had mentioned Rituxan at last visit. I have visits and MRI's every 6 months. There has been no noticeable changes in brain or spine.

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There are lots of symptoms that are common between patients and most healthcare providers treat MS based on the patient's history. Please discuss your concern with the doc as I don't know your full history and can't make a recommendation

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MRI with or without gadolinium?

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Gadolinium helps to determine active inflammation from old lesions. I normally order with and without. There may be instance when it can not be done

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risk of accumulation?

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There is a concern for accumulation. So far, no long term neurological effects or toxicity have been seen.

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Thank you, Dr. Okai, for your very helpful answers!

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Thanks you for the great questions!

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Thank you for your time today

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agree, thanks so much for your time and insights!

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Make the best of MS Week everyone!!!

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Thank you!

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Other than steroids, are there any other treatments available for a relapse?

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Yes. Acthar gel, IVIg and plasma exchange all use to treat MS relapses

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On behalf of everyone here at MSAA, we want to thank Dr. Okai and our My MSAA Community members who have participated and asked questions! For more information about relapse management, please be sure to check out MSAA’s MS Relapse Resource Center at relapses.mymsaa.org/ and MSAA’s MS Relapse Toolkit at mymsaa.org/publications/ms-...

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Thank you all!!

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