Multiple Sclerosis Patient Story: Is this an MS Relapse?
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- čas přidán 17. 06. 2024
- In this video I share some of the complexities of a Multiple Sclerosis patient story, trying to answer the question "Is this an MS relapse?"
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! Multiple Sclerosis Patient Story: MS Relapse. 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 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! Multiple Sclerosis Patient Story: MS Relapse
It is hard to be a patient- ty for recognizing that- that is one thing that sets you apart from the others- you realize our struggle- and help us effectively maneuver life around it. Awesome vid- Communication is SO vital in life in general- especially with the main Dr driving our MS care. Applauding.#Sharingiscaring X❤️💪🏻
#StrongerTogether #WeHaveMS BosterMS.com
❤
Great info, thank you. I’d add that many of us have had the experience where clinicians have disagreed or minimized certain symptoms.
Here if that happening all the time!!
Was just about to say the same.
Absolutely I have experienced potential minimizing responses. It is quite difficult to differentiate minimization and a neurologist encouraging me to maintain a positive mindset. What may very well be my doctor keeping me focused on the good aspects can seem at times to sound dismissive.
For example my neurologist has a habit of very frequently using wording that comes quite close to talk of me "getting better" which potentially is his genuine natural "bedside manner" putting as positive a spin on things as possible.
Once I was speaking with my neurologist's lead MS nurse and I asked her if Dr Zarelli was typically an overly positive clinician. She wasn't sure what I was referring to. I mentioned that frequently I would have a rather lengthy list of various symptoms that, to me, appeared to be noticeable and significantly worse. I added how nearly always he would perform strength tests and dexterity tests before informing me that I essentially was getting better. I paused briefly then asked if him maintaining a positive and motivational outlook explained his... irrational exuberance?
Well if nothing else, I certainly made her afternoon because she laughed semi-uncontrollably for about a minute.
But given that my immediate family is packed with gaslighting, minimizing, and at times outright denial of what is told to them, maybe I see gaslighting when what is occurring is much more likely just my doctor putting a smiley face on things.
#IrrationalExuberance
Took 3 neurologists, internal doctors, blood tests and told I was crazy, and 2 years later found a neuro that believed me, ran the tests and was MS….STRESSFUL! gaslighting doctors are of the times
Nice video. I once had a patient with MS who complained of no symptoms. I was examining the patient's vision and noted 20/20 vision in the left eye and 20/200 vision in the right eye. Upon ophthalmoscopy, the right optic disc was edematous, and the left optic disc was normal. When I confronted her about the findings, she said, "Oh yeah. I have noticed some blurry vision in the last week." It is amazing how little some people will complain about their symptoms.
[ guilty} myself 🤦♀️🙈🤷🏻♀️💪🏻 you get so used to quick schizop symptoms- you tend to ignore a lot until fully draggin ass cross floor… I’m working on increasing my cognicense of symptoms and recording them. Work in progress.
Unfortunately, a lot of us have been taught that it accomplishes nothing. :(
Complaining about it has gotten us nowhere for years before diagnosis so we just get used to normalizing it
Thank you for this! I feel stupid when I bring up something new with my doctor because I don't know if it's MS or just life. Such as my voice is getting weaker, I don't know if that's MS or not. I'm always reluctant to bring up new things. Thanks for making me feel less crazy!
Glad it was helpful!
Thank you. Unfortunately not many doctors are willing to listen to the minor symptoms, and only take into consideration big setbacks.
If only our doctors would care about things like you do. I ASK based on your videos. If I don’t ask, he won’t say/help. I read the material on the med I am on. I ask him to do the tests required when they are required. I remind him when my MRIs are due, then I have to hound him for the results. We should know just as much about our MS care as we can. This video topic is always a do I/don’t I call my doc. Thanks for being our person, Dr. Boster. I don’t know where I would be with this MS if I didn’t have your videos. 🧡🔥
people keep thinking they have an attack, no matter what... Thanks for the video!
You are amazing Dr Bostor!!! I wish I lived closer so I could be your patient
Thank you for all you do for us!!
If I don’t show up in the emergency room with absolute symptoms that I’m forced to diagnose myself, not one person in my “care team” gives a damn. I’m in a neurological desert. My main neurologist, when approached with questions about an MS hug that I had been experiencing, said “What’s that?” That’s the level of expertise that I have to deal with. I’m educating my doctors instead of the other way around. The twits told me to go online and educate myself about MS. As a former intelligence analyst, I did so and what I found scared me. My doctors can start an IV of solumedrol but they’re more likely to just give me heavy duty prednisone tablets and send me home. They simply don’t care.
Wow!! My MS team is okay. She does listen and answer questions. I hope maybe you could find someone else
Oh yeah I can’t even get a call back with test results. The incompetence is real.
It's so incredibly challenging. It's rough enough being sick but then to have to constantly stay on top of everyone's job to make sure they are doing it is frustrating.
Do you have ability to switch to a ms specialist? I notice my care is significantly better once I switched. I still have to deal with front office incompetence, insurance, pharmacies etc but at least my Dr care is good now.
I feel the same way! Like they just don’t care… it’s really disappointing
I wish you were my doctor. Great video. Thank you.
Thank you so much for all that you do for so many. 🙏♥️🇨🇦
Thanks for another great video, Dr. Boster! Have a great Monday, sir!
THANK YOU Dr B! This is so good.
Thank you Doctor Aaron great great stuff as always, have a great day my friend.
In order to function and not complain all the time I have learned to ignore symptoms. That's why I don't always recognize worsening. Also why a journal is a great idea.
Thank you! Your videos never fail to educate and empower me. I am fortunate to have a great team who are very responsive and, together, we work to fight this MS monster. This video has encouraged me to keep a diary of symptoms so, thank you, for one more tool to optimize my care. I hope to look back at it in 20 years and say….yep, no change, everything stable, how lucky am I!
Very well done Dr B. Ty as always
Thank you kindly
Seriously I always learn more and more from you than my own neurologist! ❤️🇨🇦
Thank you for your guidance.👍👍👍👍👍
Great video back again after 3 years. Currently recovering from a new episode and unofficially confirmed ms after 2 new lesions in the corpus callosum. 3 days of iv steroids and my foot is finally waking up so been binge watching again in parts whilst digesting the news.
Thanks for advice
Thanks Dr. B.
this resonates with me so much! I’m mid iv steroids course and having to sort out a new med…But explaining it my symptoms to my neuro was the hardest thing…
Thank you so very much for your videos. They help me so much!
Dr Boster- I wish all doctors were like you. I had a journal and took it with me and he raised his voice asking why I’m looking at the book and reading from it. I told him it was a book with notes for the appt. He said he doesn’t want that. I should remember all that has gone on. I told him my memory is bad and he said it can’t be cause I’m young. It’s frustrating.
Thank you for this monday morning video, Aaron! I really like listening to your advices and tips. I guess i have to start a journal soon. Some things that happened during the past ten years have fallen off my memory. Well, my diary might help. Have a wonderful week.😘
Patient sounds like me as it relates to how changes in function occur and reoccur. Sometimes things change in my bodily function with MS and I just don't immediately share with doctor but if asked directly, then I share them. I like your suggestions of making notes, used to do that in earlier years.
I love your channel! I thought about coming to see you but it turns out my insurance only covers emergency services out of state. I so appreciate your videos though; great resource!
Dr Boster strikes again with this amazing video , always going above and beyond . Big Thanks, yet again 🙏
Thanks again!
Thank you very helpful for me and my daughter with ms ,we sometimes over look some symptoms from England
Thank you Dr Boster - super helpful as always! 🔥🔥🔥🔥🔥
Happy to hear that!
This video was awesome. I keep my shots logged in a daily planner and write quirks down. Just saw new neuro and thank God he was thorough and showed him my book…guess who suspected of SPMS…MRI’s ordered, hoping to start Mayzent but if mri warrants I’ll be on ocrevus. Drs like you who ask makes living w ms a lot more gentle! Thank you!
Excellent info! I can relate to your patient you talked-about. Thumbs up video ~John
The telehealth visits with you always surprised me, as you keep saying "go back" and ask for more details. I have not seen a doctor here in Canada that takes that time. Although I am blessed with a great family doctor. Especially in the beginnig things can be overwhelming, I see the point of keeping notes. I had stopped since I more or less get told just get ready for things to get worse.... But will try to keep learning about alternative options and maybe keep track of things again. The MRI in the T3 scanner this week completely set me back. Haven't even thought of writing this down. Thank you for sharing such topics and for keeping encouragement going ❣
Thank you. I find the changes so subtle sometimes it takes a while to realise what is happening. This was another really helpful video. Thank you from the UK.
Glad it was helpful!
Thank goodness for you Dr Boster. Even though I'm living on a tiny island with 2 neurologists, and this is an affluent island, I have not been able to get an appointment with either of them since my diagnosis 5 years ago. I spoke to the secretary and she told me they only see people for diagnosis. I have no information or support locally and feel abandoned by the one MS nurse on island. She has discharged me for missing an appointment due to relapse. I'm stuck without you and am very grateful for the information you share. Thank you 🙂
Excellent video. Thanks!
You are welcome!
I have had MS for over 20 years now and lived in multiple states. Taking my notes in to doctors have been my saving grace. I’m really glad I found you on here!
Thanks once again! I wish all Neurologist’s saw your videos! They should be required to! ❤
Thank you for the the Monday morning video. Very helpful. Doug coffee in hand from Lyndhurst.
Thanks Dr B you are always very helpful. My consultant has retired now and unfortunately a new one hasn’t been found. I’m beginning to realise I’m in this on my own.
This video helped me so much! Thank you Dr. BOSTER! I have a severe MS and I'm on Tysabri for 6 months now and no new attacks nor lesions on MRI. It's important to know 😌 how a new attack can manifest itself under the treatment. Greets from Paris
A diary! Not that never thought about doing one, but I just didn’t because I didn’t think of all the benefits. Your explanation was so convincing that I’ll start one today! Thank you 😊
Feedback: I Made a google Spreadsheet, with columns for the date, events, symptoms/observations, medication. Love it. So simple. And I like that it’s not an app. I’ve tried them all, and found them not flexible enough.
Thank you so much for this video
Most welcome 😊 #StrongerTogether #WeHaveMS BosterMS.com
#StrongerTogether
Thank you Dr Boster, a journal/ MS symptom log has worked great for me from symptoms onset, duration, response and Dr visits. All Dr visits from PCP, Gastro, Psychological, and now applying for Disability. Thank you.
I've had MS since 1977. I so wish I kept a journal of this disease! I learn so much from your videos. Thank You!
Dr. Booster, the content you provide us is always informative, great examples and your caring ways!💕👍🏽
Dr Booster, do you mean any infections or specific ones? Please advise.... thank you 💕
Thank you for this video I wish I watched it 6 months ago
Super good stuff, hope you have a great week. ML&R
I wish I could watch videos like this without crying and feeling sick.
I appreciate so much how Dr Boster always refers to people being impacted by MS rather than suffering from MS. MS is not great by any means but you can still enjoy life even if MS means you have to live it differently.
My only team is “you”. And l Dr. Terry Wahls. I am so grateful for you both. I’m not on anything but D3. No aMS meds unless Nuerotin count’s with Lorazepam.
Thankyou for the suggestion of keeping a journal. I am wondering why I never thought of this, it's a brilliant suggestion. I'm going to follow the suggestion. I can see it helping a lot!
You are so welcome!
My personal belief is the more my Doctor knows the better he or she can treat me. They can't treat what they don't know about. Thank you Dr. Boster.
my primary MS Nero has gone clinical and stopped seeing patients. I have found a new MS Nero and will see her in 4 days. I gathered ALL my MRI scans on DVDs - All my summaries from Dr. Roy and make up a timeline of my own... Dr. Berkovich is recommended as aggressive and cutting edge. I hope she stays INFRONT of this and not chase it from behind. Your info is always spot on and very helpful. thank you.
I am a patient of Dr Berkovich and find her to be excellent. She spends time and allows me to go through my list. She gives understandable explanations and is easy to talk to. She knows I am a fan of Dr B. She shares his opinions for the most part.
👌 👌 Exactly. I don't really KNOW what an attack is, I was ALWAYS like this, and getting worse. Now that I hear the definition from you, I think I get a LOT of attacks. But - on to the next hurdle - 3 days of Solemedrol infusions doesn't improve anything, the moment they take the needle out and the medication goes down, so do I! 😩😩
Good idea!
Thank you! Cheers!
Great suggestion!
I always feel like I'm in a relapse. 🤦♀️ Especially now in summer- but its pseudo.
I'm going to start taking notes to help me know pseudo or real.
I would do so much better if this was very clear cut and dry! 😵💫
My back is in so much pain that I’m not able to stand
I always prepare a list of questions prior to a virtual or in-person meeting with my neurologist, however, I walk away with very few answers or solutions and am on my own to research solutions.
That's why I listen to you. Always give us the 411 we need!
Will be getting my MS diary tomorrow! Do you have a video on sterroid use or overuse? I have had 3 significant exacerbations in the last 14 months and got IV sterroids each time. I am starting another relapse now and fear the effects of so much sterroid usage so just trying to wait this one out.
Awesome video! I've been keeping a daily journal for the past 2 decades and it's been very useful for tracking MS symptoms, for both flareups and daily changes. Sometimes I can connect the uptick of MS symptoms to my sleep patterns, outside weather conditions, etc and note similarities of previous instances. Also very useful for noting the duration of previous ms flares and even keeping track of my migraines. Thank you for another helpful video!
I am 1 for 2. Knowing that I've always had a memory like Swiss cheese, I always make notes to take to my Dr. visits. On the other hand, even though I want to, making a journal has eluded me. Any time I've started a journal for anything, it falls away after a few days. At the start of my last round of PT sessions, and periodically throughout that time, they would have me fill out aa MS Impact Scale sheet. I've gotten some blanks from them figuring it could help as a type of journaling.
I have occult tethered spinal cord, Chiari malformation, Ehlers Danlos syndrome and I also have MS. I’ve lost sensation and motor control in both feet within the last year but it is from my occult tethered spinal cord, which I can’t access surgery for in Canada, not from my MS. My tethered cord progression first began many years before my MS onset. You can have other conditions that can cause these kinds of symptoms. It’s not always so cut and dry. It’s not always MS
I've had 2 attacks on April and May. Even when I recently had infusion both were horrible.
Do you have/ could you make a video on how to be an advocate when doctors pass off symptoms as MS, even if they are potentially unrelated? This year my gallbladder decided to get all blocked up and the decision was to remove it. The last attack I had was so bad I thought I was having a heart attack or stroke - I called an ambulance. When there was no obvious reason for the pain, etc. The ER doctor said it must be MS. A second opinion resulted in an ultrasound being ordered and it was obvious what the problem was. Fast forward to after the gallbladder removal - the area around the surgery site & the right side of my torso are kind of numb... I think nothing of it, because I just had surgery - must be related, right? It goes away after a couple weeks, I assume I'm just healing from the surgery. Fast forward another month - torso numbness returns, along with my face, arm, and leg on the right side. So I call the surgeon's office and they recommend ER visit. I go, after some tests ER doc says it's just MS. Ok, if he thinks it is, I'll trust him I guess. I don't seem to lack feeling on the surface, so for sure it's weird. But I realize the symptoms get worse based on how I'm sitting over the next couple weeks, and get better when I stretch out my core, or ice the surgery site. So I meet with the surgeon. After sharing all this, surgeon says it's MS too. So I meet with my Neurologist. Neurologist says it's MS too. Am I crazy to think this is related to the surgery, and why would MS symptoms get better after icing the surgery site and stretching? Like maybe it's neuropathy related to the surgery, not MS? I am at my wit's end. Sorry for the rant, I didn't really expect to get so heated as I typed this out. Months later and the symptoms are far better, but get worse when I put pressure on my torso for extended periods.
Hi doc, what medicine does she take and at what age was she diagnosed?
Sometimes I don know whether I am imagining symptoms or what...Sometimes i tell my self I wish I never knew I had MS so that it doesn't control my mind and thoughts this way 😔
50 degree plummet today in NJ. I was somehow fine all day. By 4:00 when it hit 28, my face felt like someone threw battery acid on it. It took me down; literally. The mailman was like “Jesus Christ! Are you okay?” Me: “yeah I’m okay.” I wasn’t. It stopped burning & then started again at 11pm. It’s the left side of my face. I thought “am I having a stroke?” It’s not a stroke. It is 12 below zero right now. My hospital is SOOOO far away. If I go outside, I guarantee; I will die. I have absolutely no idea what to do & tomorrow is x-mas eve. Dude. I don’t remember what my specialist said to do! I have an emergency steroid pack. I literally just doubled my gabapentin & Xanax for the night; just praying to god I fall asleep & its gone tomorrow. I was just diagnosed like 12 days ago! I forget everything! I keep the notes. I forget to put things down. Dr. B - I am scared.
Does that mean that the lady had new lesions?
Thanks for the video
It's hard no to become paranoid with all the symptoms MS has. I have it under control, but not knowing too much about its nature can be really distressing.
It honestly is hard to know if it's MS or something else. I have serious stenosis in my C6/C7, and a bulging disk that's constantly compressing on my nerves. It's always a guess of whether the headaches, tingling in my right fingers, cotton headedness, etc. is that or MS? Last MRI in Feb showed only two small lesions abutting against my ventricles, but it has been a stressful season, which just so happens to trigger both my neck and MS. It would be so nice if life just gave you one painful challenge to tackle.
Hi Doctor B. Love the videos. Can you help me. I was on Tysabri, became JC Positive. Then on Ocrevus. Got breast cancer. My choice they have given me for after my treatment has finished is Tecfidera or Kesimpta. I’m concerned that these are one step down from Tysabri or Ocrevus. Am I correct in this assumption? Thankyou so much
I'm not a Dr, but from my experience I was on tecfidera and they had to switch me to tysabri because it doesn't work for aggressive ms.
I believe tecfidera is not as strong as tysabri or ocrevus. Tecfidera is a big gun in pill form but less than the above 2. I don't know if this info helps you
Is lemtrada an option? My neurologist says that one is slightly stronger than tysabri.
Just want to say I hope you recover from breast cancer fast and are doing OK.
❤❤❤
Does a pituitary tumor equate to brain lesions or is it distinctly different; and should it be considered as dissemination in space? Thanks Dr B.
Hello, dear dr. Booster..My last relaps was 3 months ago because of stress I got 1g iv of solumetrol for three days. Symptoms were first changeable but after few days was constant,getting worst. I have been in a very stressful situation and my symptoms always getting worst because of big stress.It is starting by burning the skin on hands, legs,face last time there was also crawling bugs feeling under the skin.I think I have another mild relapse right now again . First symptom was burning skin and tingling legs, lips and hands, but it always starting by burning,burning feels like sunburn after few days joining by tingling or stiffness on the feet or face.All of these symptoms are old. For now burning is pretty constant,joined by mild tingling tongue and lips. Neuro said last time that it could be because of anxiety and stress last time and not believing me I had a relapse ,despite the fact I got Solumedrol 1g (iv) and i felt better right after the treatment but few days after a dose of medrol I always feel worse.I do not why. I know it is not good taking solumedrol too often.It is possible If I have more mild not that severe relapses for this time just leave it like that without any treatment? I am actually REALLY confused if these are relapses, because my neuro said that it can not be. Because burning is because of anxiety and stress.I am newly diagnosed (1 year) I have 2 mild relapses (tingling,burning,sometime a little stiffness on my feet, or vertigo) Skin symptoms getting worst so I got Solumedrol but in the hospital they do not really believing me that I have relapse because i have these kind of stuff which is actually invisible (Tingling,burning) I have never had optic neuritis or visible more severe limb relapse .It is possible this potential mild relapse just let untreated? If I do not have severe ones? Does go itself? without myelin loss?Or every single one have to be cured by dose of medrol. I am on Copaxone for 8 months taking vitamin d,exercise, taking milgamma injectable but when I have very big stress i have this kind of exacerbation anyway.I had 2 mild relapses already all cured by medrol in one year.I know that stress is big trigger for me with Ms.Can you give me any opinion on this? Please.Thank you and have a nice day.
😮
I wish I had you as a doctor.. I’m scared right now I have
1.Loss of sensation for
2.Temperature
3.Sometimes touch
Body can’t determine if I’m lifting something heavy
4.can’t feel emotions like sadness or mad or dopamine when I laugh
5. Back pain
6. Bathroom situation is also bad cause I can’t tell if I’m going to pee or #2 as bad as I used too
7.vision is uncoordinated sometimes
8. Headaches
9.was losing my taste and smell but they’re slowly coming back
10.I can’t tell if I’m full or getting full
11. Some erectile dysfunction and some loss of touch down there too
12.tired a lot
13.legs hurt and might develop a weird walking issue soon
I have an appointment here soon and going to ask for an MRI cause I have a kid to live for and I can’t be putting off my health cause of money… good luck to all of y’all I’m scared….
Hi Dr Aaron, can you tell me how did you helped her did you give her Cortisone ? is that was a real ms attack? I need to know because i have same symptoms and i went to my dr and he said it’s not attack and you don’t need Cortisone ! even tho my symptoms getting worse every day and i have it for 2 years and i got MS diagnosed 8 months ago but this symptom was with me for soo long what can i do ?? i feel numbness in my whole left side of my body please help thank you 😔🙏🏼
can you answer me dr
How often do people have relapses on treatment. On average, for example 10-20 years? Or less
What causes a person to suddenly jump? My hands jump alot while I'm watching things on my phone and I jump and drop the phone.
If MRIs have been stable but you're noticing an increase in symptoms would you say the DMT is working?
🔥🔥🌄🔥🔥
I started writing things down to show the Dr and he just looked at my list and... Well, blew me off. 😡 Bye bye sukka.. I'm gonna find a new Dr.