Multiple Sclerosis Vlog: Emotional Discussion

In this video, I share a very emotional discussion about starting treatment for Multiple Sclerosis.

The Boster Center for Multiple Sclerosis accepts all major insurance carriers and accepts consults from around the globe, both in office and via telemedicine. www.BosterMS.com or call 614-304-3444 to schedule!
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The Boster Center for Multiple Sclerosis accepts all major insurance carriers and accepts consults from around the globe, both in office and via telemedicine. www.BosterMS.com or call 614-304-3444 to schedule!
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COMMENT with your thoughts and questions below! I look forward to reading and responding!

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NOTE: Make sure to talk to your provider before ANY treatment decision. We hope to educate, empower and energize those impacted by Multiple Sclerosis. This channel consists of a collection of formal lectures and informal video clips about MS to help education others. These videos do not provide medical advice and are for informational/educational purposes only. The videos are not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read or seen in any of our videos. They are just to help educate you about the condition guys!

[mariatuppergoebel]

The story of ur patient is exactly my story when I was first diagnosed at 23years old. The doctor who diagnosed me had not bedside manner or way to communicate esp. with young healthy strong active young women other than take these videos watch then come back when ur ready to start a DMT - only injectable a at the time. Well I felt great no symptoms active healthy strong. Well here I am 20years later and hearing how u explained the reasoning felt sad and grief myself bc wish it was explained to me in that way. I waited a long time to start then once I did we saw lesions shrink and/or disappear. I was only on for a year bc then tried to get pregnant for 2 years, pregnancy and breastfeeding then had worst attack of my life 2 years ago - started DMT which no longer worked. Currently working on starting a new more aggressive DMT but point is that after weighing the side effects with symptoms had at time decided no don’t need DMT. This was a terrible decision because I can’t repair the damage that has occurred and accumulated and I see the progression in what I am capable of and I’m 43 years old. I know it’s hard to learn from others but if u can I am here to say please don’t be fooled - MS is always working in the background so if u can maintain how u feel now by taking DMT DO IT!!!!

[ccollins]

I grew up with a mom with MS. I watched her struggle with no available treatments. The deterioration was horrifying. Then in 1988, I got diagnosed. I figured I'd be heading down the same journey from young, vibrant, and able, to middle-aged, full time in a wheelchair, no bladder/bowel control, constant infections, skin breakdown, seizures... the whole experience. In 1996, when Copaxone came out, there was finally a drug that would help, w/o the side effect profile of the interferons (Copaxone). It was a daily shot at the time, but I'd picture myself like my mom, and happily stab that needle in every day. From the perspective of having seen what a monster MS is without treatment, and now knowing that at the same age, my mom was much more disabled than I am right now... I might be the only person who comes joyfully skipping in for my infusion?

I've come to the conclusion that those of us who are into this MS diagnosis for thirty years but are still up & kicking butt -- we make this disease look easy. This newer generation or these newly diagnosed patients are seeing US, who are being treated, and think "it doesn't seem "that" bad." It is. It's worse than you can imagine. It ruins your independence. It steals your dignity. I'll say what my mom said to me when I was in the process of deciding to go on treatment and thought I'd wait to see how others faired. I'll never forget the clarity of her words (which were often slurred, but these rang out clearly; "Are you out of your f*([<ing mind?" She had lived for anything that showed any hope; bee sting therapy, german spa treatments that were supposed to help. Nothing did. Her greatest joy was seeing the change in the trajectory of my illness. Please, please, please get on a DMT. If you're newly diagnosed, you.have.no.idea the horror of this illness, untreated.

[wadewilson]

I was diagnosed in 94. Started Betaseron in 95 and stopped last summer because I started Ocervus. I never missed a shot! It was tough but I knew it kept me going. I had 2 pseudo events, mostly from overdoing. I have been able to anything I wanted to do. My MRI had not changed in 25 years! I am now on Ocervus basically because my doctor believes in continuing medicine. I take care of myself with exercise and diet. Thank you for your videos. They encourage me that I am doing the right thing. I am 65 years old but feel much younger than that.

[davidyouens]

Hi there everyone I am 57 from UK was diagnosed 17 years ago. Ex professional sportsman but started on copaxone immediately. Had not many problems until 3 years ago and had 3 bad relapses in a year, mainly due to stress from full time job. Been on tysabri now for 2 years and no further relapses 😁. Now work part time on supermarket checkout. Please everyone listen to your specialist wiegh up all your options. Great analogies and excellent words

[anasangel]

I’m newly diagnosed and engaged to be married. I am choosing to do a DMT because I don’t want to give up my future plans without a fight.

[bellespk]

I felt the same way. When I was diagnosed my doctor handed me a list of DMT’S and said pick one. He did not go over them with me, he said do your research and make a decision. Reading all the side affects scared me so I was not going to start any medicine. Someone shared one of your videos that led me to your YouTube page. I watched your video on the different DMT’S and it completely changed my mind. I must of watched the video a dozen times. I have gained so much knowledge understanding through your videos. Hope to see you in clinic soon 😊

[dougtagg]

Thank you for the video on dmd’s. Fortunately at 63 it was a no brainer to take a dmd. . If I was in my 20’s or 30’s it would be more of a struggle to decide. I wish your patient the best of luck in her decision. For my age group all I think about is Covid, so I just returned from a month long( 2 weeks hospital and 2 weeks rehab) Covid vacation. Looking forward to my September Ocrevus infusion and being semi healthy again. Doug, coffee in hand from Lyndhurst.

[cookalacha]

My husband was diagnosed with MS last year at the age of 31. We were not sure what to do treatment-wise because the medication pamphlet we were given was overwhelming and confusing. It was a dark time. We felt lost and alone until we found your youtube channel! Thank you for sharing your knowledge and experience with us through the videos you make. We watched all your videos talking about and explaining how the different DMTs work to help us make a decision and advocate for the treatment we felt was best for my husband at that time. You played a crucial part in our MS journey and we feel lucky we found you from the beginning. We can’t thank you and the community we have found here enough. Thank you, thank you!!!

[syazwanimohdsabri]

I love the way you've given analogies. I understood MS when others around me didn't. I started with Rebif under attacks from my own family because they only wanted kids, not management of MS. It was already advanced and aggressive. 2 years on the dot, Rebif failed and I got multiple relapses. Now I'm on Mavenclad, doing family planning and I've learned to not bother with what people say when they don't know what we've been through. DMD is just about being careful to me. I've lost physical ability, I can no longer run the way I used to and I used to have lots of energy without the pain. Now those have become reminders of what will happen if I don't do self care and take necessary actions.

[hlm]

Your analogies are great. Diagnosed before 30, I knew that medicine was highly important for my life. Although I have been on 4 different treatments, I have had exteremly few excerbations and will preach to the heavens that the treatments will let any patient hit their goals.

[angiehunt]

I was started on Copaxone immediately on diagnosis. 19 1/2 years later and I’m still very active. I do have seem fatigue. I have a lot of trouble I the heat. But no one would know I have MS. So glad I had the doctor who believed my symptoms and was proactive in my care. After 14 years on Copaxone, I now take a Gilenya with a lot of success.

[terimassoud]

Wow I wish I would have known you 15 years ago. As because I had kidney stones three years ago, I was having hardship and didn't stay on the right meds, didn't have insurance for doctors for 6 years and now have external issues that led to disabilities etc. Your ideas make perfect cents

[joshv]

When I was diagnosed in February 2018, the DMT's were not explained to me. I was simply told to choose one out of the 16. I chose the "easiest", GILENYA. Between then, and the time I came to you in December 2018, I had two pretty bad relapses. You told me that I needed to be on a way stronger DMT, TYSABRI. I have not had a relapse since! The infusions every 28 days have become "comfortably routine", and I am very grateful for their protection. Thank you for the knowledge, Doc!

[rascaldenes]

Dr. Boster, there are so many of us out here that when we were dx there were none or only one medication available. I always try to help newly dx to not go down the road I did. I didn't start dmds until 2 yrs after I was dx. If I had been on something (even if it wasn't the greatest out there by today's standard), my life (and my then 18 month old son's and husband's life) may have been different. LOVE that you are my doctor and all that you do for us MS Warriors!

[BridgetMermikides]

I started DMT in January this year. The side effects were a big shock but I’m accepting it now and realise I need to keep going. Thank you for this excellent video.

[philippaellis]

I have been self injecting 3 times a week with Beta Interferon, for my relapse remitting MS for a significant amount of time, over fifteen years. It means I still have no visible effects of MS to see when people meet me or spend time with me, though I still experience MS exhaustion and need to manage my energy and activity. I still get stumbly when I'm tired and need to rest! I appreciate my Disease Modifying Therapy so much, it allows me to live my best possible life with MS. I think your video is so very helpful and life affirming, the metaphors are very useful, thank you so much.

[nicolesaylor]

It is a hard decision! I started Avonex and had horrific side effects. What I thought was MS was partially the medication. I did it couple of years and went almost 4 years off of a DMT. Honestly you are the reason I decided to get back on medication! I am glad that I am much more educated now. I am able to recognize that I have been dealing with some extra anxiety since starting Gilenya. I was scared for along time to get on Gilenya and I finally realized that I am lucky enough to have not had relapses. I am also in a much better place now then before. My husband and I were having horrible marriage problems and he was in the middle of a drug relapse. He is close to 2 years clean and we both have been able to recognize things in my emotional health that aren't normal. I have anxiety issues that are a result of MS. Anger and depression also occur especially times of frustration when I can't find my words or when I can't express myself properly. But as frustrated as it is to not have full control over my emotional side I know that it is an MS issue. It's my normal. My advice to anyone recently diagnosed would be to get on your DMT and have a genuine talk with your doctor about some of the more scary side effects. It is good to start these kinds of medications knowing the different ways these medications can negatively impact you. Some people might say that it is bad to do that but these medications are serious business and I fell into a very dark place on that medication. I think if I had really understood that feeling the way I did was not normal even for MS. I guess I just assumed that it was being diagnosed with something so confusing and this was normal. It was a vicious circle in my mind. I thought the way I felt all of the time was how I would always feel. I had flu like symptoms 24/7. I figured it was all MS. I let my prescription lapse and just stopped cold turkey. And for years I refused to even consider anything else. You made me realize that I have been so lucky but it wouldn't last forever. I just wish my doctors would have been more clear about things. I was told about flu like symptoms up to 24 hours after the shot that would eventually get better. It never did and it was daily. I had no quality of life. I was always fatigued. My legs would be hard to get off the ground enough to safely walk. I just know if I understood that it was not my MS I would have been more proactive and could have tried a different medication. I am almost done with my second month on Gilenya and I have been dealing with extra anxiety and have been having a harder time keeping my emotions in check. My stomach has been off also but I knew this was going to happen. I am not so worried about it this time around. I don't think I should have been off my medication as long as I was but I also didn't understand what I was getting into either. I think it would have also help if my mom and husband would have also been told that it was possible I could get so severely depressed. I hope I don't scare anyone but if I could go back and know what I know now I would have been telling my neurologist. I was so greatful to know what was wrong with me I didn't want to sound whiney.

[freethinkeralways]

You are 100% right, Dr. Boster! When side effects of the meds are worse than the symptoms of disease + DMTs are not a cure, it's really hard to take them even in hope for better future. Thank you for this video!

[chrisc]

Another outstanding video this morning with great analogies.

[terrig]

I started Avonex as soon as I was diagnosed with MS 21 years ago. My husband’s mother and brother had MS and they were both bed ridden (no DMTs when they were diagnosed). I have been on Ocrevus for three years and have had no side effects. I’m so glad I started on something as soon as possible.