Multiple Sclerosis Vlog: Why am I worse?

In this Multiple Sclerosis Vlog, I answer the question "Why am I worse?"

Howdy, and thanks for learning about MS with me, Aaron Boster. I'm the founder of The Boster Center for Multiple Sclerosis, where we care for families impacted by MS from around the globe. We accepts all major insurance carriers and are actively enrolling several clinical trials! www.BosterMS.com or call 614-304-3444 to schedule!

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COMMENT with your thoughts and questions on "Why am I worse?" 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 (and in this case, "Why am I worse?") to help educate 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!

[AJHR]

Best MS advice anywhere to be found, thanks!

[Siouxsiebecksable]

You really are a fountain of Knowledge. I have not seen my Neurologist in 2 years and next appointment is Aug 22. I have had 2 appointments by phone. I explained recently how I had all these increasingly debilitating symptoms and I was told that they are not not MS related because my MRI is stable..eh hello..I know my own body. This is a very lonely disease.

[LaurenInJersey]

Thank you so much for this video. My latest Neurologist appointment yielded no new lesions so I couldn't understand my progression. She's a MS Specialist and never touched on this explanation. Life is getting so much harder for me and now I understand why. I wish I was closer to be a patient of yours. Many thanks from New Jersey.

[tishorea]

As a newbie, I feel I’m at the right place to get real answers. Thank you for all you do! I listen to as many of your videos as I can, I take notes, I even look at some twice. Finally, I feel a lot better knowing someone really cares, especially for senior patients learning about MS.

[kevinhorne]

Thank you. Good explanation. This has been a problem of mine for years. The nurse would call me after a scan and using the clinical impression on the summary to say “good news, nothing changed.” Oh really? Based on this nothing has changed pretty much forever. I now can’t walk, run, work, mow my grass…..). Does that sound like no change? This is the reason I’m a patient if the Boster center even though I live 1000 miles away. Thank you dr. B!

[KaitCervi]

I am a medical student with MS, just diagnosed in March. I was just chatting with my research team and our adviser yesterday about some of these very things. What a great 10 minute summary of what life with MS can be like! Take home message: PREVENTION. The challenge is convincing people to do it, and do it with high compliance when there is little to no immediate gain to motivate them to keep going (I was a rehab personal trainer for 8 years, boy do I understand this).

[Haghenveien]

It's frustrating because for the outside world I'm not worse, I don't have new spots, my EDSS is the same, apparently everything is the same but I can tell that it takes me more effort do to the same things. I have concentrate and put more attention on what I'm doing if I want to do it right and not having accidents.

[deneenbabin]

Deneen, pump girl in Dayton. Great video! Best part to me was when you talked about treating spasticity. In 2017 I got Baclofen pump thanks to you. You hit the nail on the head when you said QUALITY OF LIFE. My walking is still very challenged. But the reduction in pain thanks to the pump has improved my life more than I could have ever imagined !!! You changed my life, Dr Boster. AMEN. :))

[AngelVixen]

I haven't been diagnosed, but I'm really struggling. A couple years ago, I had a brain MRI that showed nothing, so I was told I don't have MS.

Then a week ago, I saw a new neurologist. He talked to me like I'm dumb and told me I have convinced myself. I said no. No. No. But he wouldn't listen to me! I have NOT convinced myself I have it. I've convinced myself it's a very real possibility.

He told me that with MS, you have an attack, then you get better. Blah blah blah. I don't know about attacks. I don't know if I've experienced that. The only time I've ever felt better is when I'm sick and get steroid shots in my butt. Then part of it feels better.

I struggle with walking. I cannot walk far. The more I walk, the worse I get. But "because I walked into his office the way I did" because I forgot my cane at home with my cognitive issues, and I keep forgetting everything or where I put something down or to grab something I need before leaving, "I don't have MS." I told him I want tests to see. That I was trying to ask for a spinal tap. And really, I want one because if this isn't MS, there is something else wrong.

He diagnosed me with fibromyalgia. I have wondered about that for years too, but my understanding is everything going on with my legs, fibro doesn't cover. I have degenerative disc disease in my lumbar spine, and some believe that is what's causing my hip and leg problems. "That the little bit that is seen in that MRI wouldn't cause what I'm feeling." 🙄🙄🙄

I'm just so frustrated because I keep hearing things that sound like MS is a very real possibility, and I know I need treatment to help everything and stop the progression if I do, but I cannot get these doctors that have the power to find what's wrong to do what it takes to make double sure it isn't. 😭😭

He said that my words told him I don't. Even though I suck with words, and I can't get out what I want to say right, that doesn't matter. I tried to explain it to him, and he just fought me. Wouldn't let me talk.

Then he was like, "Since your biggest complaint right now is the cognitive issues, I'll send you to have a test. If the result is abnormal, I'll have to eat my words." Apparently there's a long line for it, so I can't go till like October.

But whatever, I've been in pain, gradually getting worse since 2015. Started really trying to figure out what's wrong in 2017, what's a few more months to find out if my cognitive issues aren't all in my head? 🙄

[kathyeyesopen]

It is absolutely worth knowing & understanding, Dr Boster. I’m 71 year old female and along with aging symptoms I have had worsening of spasticity, cog fog, all over weakness and almost no mobility EVEN THO I’ve had No new lesions for about 10 years. Lesions seemed to have stopped once I was put on Betaseron and then Ocrevus. This info helps because I thought I just wasn’t trying hard enough or it was all in my head. Thank you so much for this info.

[franciir]

Thanks Dr B, not only for your knowledge, but your empathy 🙌

[GreySkyLady]

I appreciate this. My husband hasn't had any new lesions since 1995. None. But he's EDSS 8.0.

[lyndasheppard]

My MS was diagnosed in 1980. I have learned more about MS from you
than all of past neurologists combined. Thank you for these information sharing videos!---Lynda S. Maryland

[syazwanimohdsabri]

This actually made me feel better, that I'm not just imagining things. Hi from Malaysia. Thanks for such an informative video.

[JessicaHazewinkel]

Excellent video. I would like to add just another important cause: side-effects of your medication!

I was unlucky enough to have the uncommon side-effect of increasing fatigue and cog fog on my first DMD. It got me from a 40h+ work week and a very active lifestyle to sitting home, barely able to just walk my dog.

I got off the medication and within a month my energy came back. Now waiting on approval for another DMD.

[amyjordan]

Wish you could be my doctor here in Georgia! You are so gifted at what you do! Thanks so much for the videos and information!!!

[myork]

I feel so heard. You’re such a blessing!

[EvenSoItIsWell]

Thank you Doctor B! This is one of my favorite videos. It is so important to hear about treatment of depression, spasticity, and cog fog! Keep up the great work!

[xtrodinary]

Thank you so much for caring...you are a gift to the M.S. community. Thank you

[millymills]

Good morning Dr.Boster.I'm currently undiagnosed and suffering from many MS symptoms.Your videos have been very helpful for me to understand better these symptoms.I'm in Mississippi and struggling to find help.
Thank you!