PAIN was the biggest reason my Dx took 18 years (1980-1998)! They said it was NOT an MS symptom. Thanks again for addressing this topic and thanks to the specialists that finally realized that MS pain is real and the impact that it has.
@@darlene1187 Darl... Hello it's divine😏👍💯 A link n a comment... N a little sunshine 4 u :)🌠🙃 I'm sorry it's sounds so scary but i too had a long dignosis.. But please don't fret!!! I hear to promote a calm in that storm for... We're now at the end of 2019... That was then and this is now! And wow how far we have come! From no meds. To sorry u can't have it... To maybe... To ahh I guess so.. To two Then there were 3... And then there were many!! And wow now there's .. A year .. now.. With plus 20 dmts... Say what?! Sweet! And most times. Even a spinal tap isent even necessary ..less than 20% Dr. B can correct my % if I'm slightly off.. But there's also something new something soon..to promote better m.s. care.. and better quicker dignosis.but plz know every case of m.s. is different I've even heard people call us snowflakes. To say no two are the same. LoL 🙃. And maybe we're a little silly. I know I am. But... I've linked a video from Ohio health... It's from a Dr. That Dr b works with Dr. Jacqueline. Nicholas. I'm sure she had many fancy titles but she is a neurologist. At Ohio health . Plz click the link..n find her amazing qualifications and her wonderful seminar on n.f.l. I give her a thumbs up I think she's funny. And very smart. I love hear talks. Sorry Dr b. Lol So.. please smile... I'm sending sunshine ur way... And I'm glad your apart of this village... N.F.L. #a Ohio health talk about bio markers ... And nfl... Check out this link... As she says not to be confused with football lol.. th-cam.com/video/VT5qF38i008/w-d-xo.html Sincerely DIVINE ✍️💕🍂🐤
Aloha Darlene , Divine is correct! We have come a LONG way since the 1980s. MRIs were like a new toy back then. Although there is still no ONE test to confirm diagnosis, today they have the tools and knowledge to look for what is and what isn’t MS. Blessings be upon you and your journey! Smile, it’s just me...Janeel
You are a gift Dr. Boster. You give so much of yourself and your life to help educate us and support us. I have answered yes...thats it to too much of your information in this live video...on replay. MRI to confirm MS in a few days...with all your info...Im not so nervous about this becoming a reality for me. Thank you.
Everyone can see it on my arms. They have huge permanent and reoccurring nodules from the insane itching. My arms look so bad, people think I was a drug addict. Makes me so sad. But, your information and amazing attitude help keep me educated and your personality makes me happy. Thank You so much for all the time you take to share this information. It’s like having a doctor that takes extra time with you !! Thanks again, ☮️💟&🦄’s Julie
I totally give that answer to people that say to me (especially when i take out the handicapped placard) "You don't look handicapped".... i reply "and you don't look ignorant, yet here we are!" I appreciate your efforts here to explain to your patients... enjoying watching your persona evolution on the videos too...
Cant say thank you enough. What you give to this community is so much more than we could reasonably ask of you. You take your free time to help people who really dont have many helpful resources. Its amazing. You are amazing. Please dont push yourself beyond a reasonable level. ❤ We treasure you and want you to also take care of yourself.
You are so important to the MS community worldwide, thanks for this channel and helping us to understand MS. You fill in the blanks, we need to understand.
This works for ALS Patients also. The MS Clinic at Riverside Hospital in Columbus, Ohio also helps with ALS Patients for Baclofen Medicine Pump Inplants and works WONDERFULLY
Thanks for another great live stream Dr Boster. From Australia. I live with trigeminal neuralgia. When it plays up, it feels like someone has punched me in the face. My right nostril will sting like crazy, two front teeth feel like they are being pulled out. I am on a regular medicine, which helps with a large majority of the pain most of the time, thank goodness.
Yes. Dr.B,thank you for validating what we as MS'ers feel but are told it's not your MS explore options with other Specialists. It has been storming here quite a bit,I seem to always experience an onset of pain on days prior. I have TN,lots of meds anything that lets me know my face isn't in a Critical stage is life changing! I just want to be put out of my misery on those days,I can deal with side effects of the medication. The Hug is painful, I can't breathe,my ribs hurt. I would do Optic Neuritis, The Hug any day. Heaven help us to find competent neuros open to all areas of medicine to help us,I wish more doctors were on board with your mindset. Thanks for being here with us to be a guide and influencer!!!
I don’t know if I have ms or not but I got all the symptoms. Last week when I was brushing my teeth my head fell in the sink. I grabbed my head with my hands and lift it back because I couldn’t control it.
I am learning that exercise is one of best strategies to treat pain in me legs, hips and buttocks. However, I am also learning that I need to know my limits; over do it and I will suffer with parasthesia and pain so severe that I stuggle to stand and walk. Yet despite the severity of pain, it is the simple things that are most effective like rest, heat packs and Tylenol.
Hi Dr Boster, please may I ask for a video on gut mobility issues leading to SIBO in MS. Slow digestion and Small intestinal bacterial overgrowth have been shown prevalent in MS patients. If you have the time, please may I ask you for some information with regards to this? Thank you for all you do for the MS community.
This format is my preference. It is more focused and packs more education and information into the videos, because you are able to complete your thoughts and provide more concise information on the topic, without distraction of reading and answering questions. Answering questions at the end is the the icing on the cake. I understand your passion in wanting to connect with your viewers and your village, but as the village is rapidly growing (yeah, I'm so happy about that) I think starting out with a narrow topic and educating us first, and then jumping to questions after, works really well. Maybe do an "Ask me Anything" video every once in while for fun. Just my opinion. (everyone's a producer all of a sudden lol). That being said, I appreciate everything you do, and I'll take whatever you so graciously publish for us ! Your time and expertise is so very valuable and I am grateful for all you give us in your free time!
Aqua aerobics is an excellent way to exercise. I’m a retired certified fitness instructor and taught many of these classes. I can say without a shadow of a doubt that this is a double perk because your body stays cool and you’re body weight in the water endures waaaay less impact. There are also many exercise devices you can purchase such as styrofoam hand weights, an abdominal belt etc. I have a pool and exercise in it everyday.
Thank you so much for this video as well as your series decoding neurological exams! After years of bouncing from doctor to doctor for the pain, numbness, etc. from what I have been wrongly told is due to my arthritis, your videos have prompted me to finally see a neurologist since MS seems a very likely diagnosis for me based on my symptoms. Your explanation of what I’ve been experiencing is spot-on and I am finally starting to put pieces together. Thank you so much.
I have a great time with spasticity, all shapes and sizes. And I have been learning to deal with it in but I think, the baclophen it’s helping my MS hug
Optic neuritis in the right eye with the same description as you described Optic neuritis In the left eye with no pain with more damage than the right eye and almost lost vision
I have so many types of pain from optic neuritis to sharp stabbing pain, pulling pain, jolting pain, etc. For optic neuritis, it felt like someone stabbed my eye sharply, then it dulled to throbbing pain, to something like my eye is pulled out of its socket. Sometimes pain means an electrical jolt from my neck to my elbow, fingers. It can even mean pain on both knees as I walk or climb the stairs. It's hard to explain, even my closest family members (except husband) won't believe me, even from the start. This made me feel better, since we talk about it together. Mine is active, even with dmd.
Dr. B I love this new format but I vote for whatever works best for YOU! This was such a great topic and I learned a lot! Just an idea of a different way to try things - I was thinking if you made an informational video on a topic (ex: pain) we could watch it and post all of our questions in the comments. Then a week or so later you could do a follow up (live or pre recorded) video answering our questions related to that topic. That way you would have time to preview the questions. Just a thought. Again, we just appreciate your time so whatever works best for you :)
Just saw my neuro ophthalmologist today because I thought I had optic neuritis again. This time I have uveitis. Both are very painful. Feels like my eyeball is throbbing and pulsating. Similiar to a migraine headache but in the eye.
Did he cover your eye and tell you to keep the light out of your eye? Very painful. Did you try Prednizone eye ointment, that helped me, and warm water compreses on my eye helped too.
Been having dental pain and scalp itching. Sometimes it feels like ants crawling up my arms...ugh! Also, noticed I am having problems with grammatical writing. Didn't have it before but now is becoming challenging.
What a lovely, gentle, memorable place Oxford is! I was there a looong time ago, Alison - 1967! I relished every minute, especially Oxford U. itself ❤️❤️❤️/ Be well.
Optic neuritis was the symptom that brought my dx. I went completely blind. It hurt. It felt like someone was trying to gouge my eye out with a spoon; apparently the person with spoon was very determined and unsuccessful. That was sixteen months ago. My eye still aches and my vision has not returned beyond shadows.
Hi!!! Dr. Boster 🤩 You are so awesome!!!! I am in FL!!! I live in pain and my pain is affecting my fatigue and my sleep... a vicious horrid cycle! I keep sharing you with other people with MS!
Spasticity is my worst enemy. Cramps are a nightmare. It happens in my legs, hands, back and feet. Sometimes so bad hubby has to massage and work the cramp out, while I'm crying begging him to make it stop. A couple of times it's been so bad I've had to go to ER.
PAIN, my middle name. I have had all of these pain syndromes in my 38 years of MS. Just started CBD Hemp Oil, with no relief yet, but hope it will help. A Radio Frequency Ablation is scheduled for Aug 13 for my lumbar pain. I can tell you all about PAIN.
I didn't know I had MS or optic neuritus. Looking back I had bad eye pain but thought it was due to working long hours in front of a computer. MRI and evoked potentials test confirmed diagnosis.
Dr. Dr. Aaron🤓🎤🖌☕ What an awesome new format.... ALMOST 12k strong wait... What? Were! 12k ....sweet!🌠🌠🌠🐾🐥 and sprouting new members everyday.. it very much reminds me "THE GROWING tree".. or maybe the grass below it is a bunch of these intricate puzzle pieces that only fit if we're all together...a.e. if any member leaves we notice... we loose water... we just won't grow right... and for.all these reasons I'd say we're #kickmsvillagestrong! 🐾 After all ..Its already a well oiled machine in its own right.and every single one of you are the reasons......But to be honest I'd be just as happy with being the absolute smallest part of it... As long as it kept moving. Sincerely Divine!🖌🤗🐥
My optic neuritis pain - I had a sharp pain on the side of my head on a Friday night and it came with a big headache. I took headache medicine and went to bed. I woke up without 60% of the vision in my right eye and the side of my head hurt like post migraine.
I have had optic neuritis. It started with bi-lateral wall eyed INO I have a video I can send to you. The Neuro Opthmologist from UCI videoed it. He said it was beyond text book, but is so rare, he wanted to share it with his students. If you want to see it, where should I email it to?
Sharing a personal “Pain Hack” Step 1) Cool Shower, with Motivating Music, and a good old fashion cry. Brings down core body temp - puts you in a better mood - relieves stress that is beyond your immediate control. Step 2) Do something positive for someone else. But make it do-able in that moment. Examples: Order a couple of pizzas and have them delivered to a homeless shelter - Say a prayer for someone in need - Write a letter to an old friend. Etc. Step 3) Rest knowing that you are important and are still a positive contributor to this world, in the you that you are right now. Drinks some fluids and watch a comedy. Laughter helps!
Step 4 Never lose sight of your goals. Sure, you may have to take some time out and break them into smaller 'bite size' chunks but where there is a will, there is always a way! For instance, 3 months ago I started chair exercises like marching on the spot. Today, I walked the length of my street (~ 1/3 mile) independently; Cane in hand but not in use! 🚶♀️
Aloha Doug! Eyesight- totally get it. I love all types of music...never heard of Mantavani before. Do you have a link of it to share with me? Smile, it’s just me, Janeel
Thank you so much for this specific topic today, it confirmed that I’m not imagining these things. This live stream could have been called “MS hurts Susan’ lol
Hi! Dr Boster 🤩 I hope you see this comment on which platform I like better... I love the Q&A i learn so much about MS with those live Q&A's but I also like this platform I know you are super busy and yet you make time for this channel but is there a way that you could do both platforms? Thank you again!!! I am spreading on my instagram page that you have a TH-cam channel and how much your channel has helped me in my MS journey!!! THANK YOU! 💞
The pain I had with my optic neuritis wasn't just in my eye it was in my head aswell like a headache. My eye felt stiff too. I only have light perception in my worst affected eye now. I had steroids and plasma exchange to speed my recovery as both eyes were affected at the same time. My remaining vision is distorted and at my last OCT scan my consultant said the blind eye is permanent . I have visual field defect in my good eye. I am finding Fluoxetine helpful for the pain I experience all over, it doesn't go away completely but its bearable.
i got diagnosed with MS by having optic neuritis. for me, i had pain that was 1/10 {10 being extreme pain} . i had this pain for 2 days untill all of a sudden it got worse 3/10. next thing i know the following morning i lost more then half the vision in that eye.
I’m on lyrics I’m in Idaho and missed your live I’m now subscribed I’ve had multiple sclerosis since 1997 and recently diagnosed with SPMS and I’m not getting around very well seems like I’ve gotten worse since I had an abscess that was MRSA in 2018. I’m going to get some MitoQ to try and see if it help me.
Put it this way I'd rather give birth again. My optic neuritis was excruciating and anything hot or cold touching it made it worse. Because of this and having tn 6 months later I'm seeing a neurologist Monday query ms. I was told that my on was classed as my first episode by opthalmologist and I had 50/50 chance of having it.
I’ve had Optic Neuritis twice and I’d rather give birth to an elephant. The pain is the worst pain I ever had in my life. My MS is on the left side and so the left side of my face went completely numb along with visual loss and severe pain in that eye.
Okay so this is a lot... I use Cannabis all the time. CBD during the day helps with pain, neuropathic pain, numbness, keeps me calm. At night I do not sleep well, so I take a 1:1 which is CBD and THC mix, not only does it help me sleep, spasms, stress is bye bye but helps all the same as the CBD for me. Even migraines. I have a golden ratio mix that I use for the really bad days which has CBD, THC, THCA, CBDA, CBGA, CBC, CBG in it...this is specific to people that have nerve pain. I use a D-8 THC that helps so much with out the psychoactive properties of normal THC, also know as D-9 THC. All are either capsules or edibles. Daily I take... turmeric, fish oil, multivit, Boswellia, vitd. I also follow an antinflammatory diet. This is not a standard fad diet that can have unhealthy habits. It more combines the heart association recommendations and the Mediterranean diet. There is a lot of evidence out there on the NIH site of how food causes inflammation. Here is one article which goes down to the molecular structure of our bodies cell types and the influence food has on MS patients.. www.ncbi.nlm.nih.gov/pmc/articles/PMC4342365/ So with all these I have been able to get rid of ALL, except for an rare tylenol or motrin, medication to help with all the symptoms above. My Disease Mod Drug is now Ocrevus. I did my first dose about 3 weeks ago. It made my hands and feet burn and they are numb a lot. This was something I rarely experienced at this extreme level! All the above methods I use help me. I do use Adderall XR 20mg, but I have had ADD for a long time before I was diagnosed with MS. That does help with the fatigue and allows me to get through the day. I also have Hashimoto's, and have had this since I was a senior in high school, so I use Synthroid. My stress level is way more then many I know, my husband has a brain stem tumor and will never work again, cannot write, issues seeing, speaking, tremors, walking, spinothymatic pain all ataxia..so I am the wife, the husband, the mom and dad to two children one 5 yr old boy the other 12yr old daughter (going on 18, lol)...I work full time and I am his care giver, the list goes on....my mom had 2 heart attacks recently, my brother was in a serious car accident where his gf died....there is more but you get the idea. My point the Cannabis helps and I manage okay. Dr Boster, I truly love your channel and I know this works for me but it might not for others, but want to share what I do.
MMJ helps me as well. Thank you for the detailed share on the subject. I would like to send hugs through the internet to you. No one should have so much on their plate. I have a lot of respect for you in your journey. ❤ Each of our experiences are unique, and those experiences are pushing each of us to our limits. It is my hope that you can find help with these individual challenges. Try looking into NMSS assistance or with the OMS group. Both groups have assistance programs available.
Can optic neuritis resolve on its own? Or if you take NSAIDs relatively regularly for musculoskeletal pain (no known cause yet.. full body, muscles and bones head to toe).. will it calm down the inflammation enough for pain to go away? How long does it last? Ha! Lots of questions but I'm curious based on things I've have had happen off and on.
Probably not a question you can answer. But why is it some days I wake up in agony. Like sobbing in pain, sensitive to light. But once I'm fully awake after a lot of coaxing it's back to my normal levels. It's soo bizarre and also very upsetting when I have to do things yet have to spend anything up to an hour bring myself round to the awake world.
Quick question if you happen to read this, So, if I’m going to cut out sugar, can I replace it with honey or some people use Agave syrup, That would be helpful to know, it would make the transition easier, since so many of us are just used to using sugar by default, and it’s in so many foods. Ahhhhhh, does this mean also, to read food labels and eliminate all processed foods with sugar ? And what about “fruit ?” Some of those contain sugar. Ok...... so as I got writing I had more than one “quick question “ go figure 😉 Any knowledge would be helpful, either from you, or anyone else in n this community that has sound knowledge about this. As Always, thank you SO much for your time. ☮️💟&🦄’s
I have Paresthesia in both feet. Left foot wayyyyyyy worse then right. I have a lesion on my t spine. Left foot will burst into flames when I am tired or over heated. Then I get spaghetti legs. Other than that, I am fine. So I guess im winning. Wait i had M.S.hug too. I would say it is the worse cramp you have ever had. It squeezes the breath out of you. Baclofen worked for me, made me tired and feel like I was hungover.
@@lenorelegnetti4241 I was diagnosed in 2018 at 52yo...for four years I was told that I had sciatica...i never had pain, just my left leg went numb...i had 3 caudal blocks and got feeling back, except for my left foot...in those four years my right foot, just on the bottom, has fallen asleep...i lift weights 5 days a week and I believe it has helped..big time, but left foot still burst into flames (foot gets really hot and feels swollen) when tired. Also when I over do it my legs become spaghetti legs, i loose my balance and trip over air.
John Kilman interesting. I’m 62 now and it will be my ten year anniversary in November, so I was diagnosed at the same age as you. The good news is, I’ve never had another flare and am still stable. Hopefully this will be true for you also.
@@lenorelegnetti4241 Hi, I was going to say me too! I am also another "lefty" with hot/burning/cold sensations in my left foot more than my right. Not sure about the MS Hug: heart, GIT and thoracic spine investigations all clear...I guess I am just weird! 😕
I guess I'm pretty fortunate compared to the rest of the village here, I only "kvetched" about neck pain if I sit in a normal chair for more than 20 minutes. Also about bowel movements, which those who surround and love me don't really want to hear about, but that's the subject of another clip. I do prefer individual subject format to live Q&A format, the shorter the better. Writing at 3AM Saturday night from the home of my daughter in Lod, mom of 9 of the 22 grandchildren, who seems to be wondering why, if I'm so sick, I don't go to sleep already. ;-)
Trigeminal Neuralgia is my worse pain symptom! I am on the highest dose for all of my Epilepsy meds already, yet the slightest breeze to my face can trigger it and lay me out! Most often it is the top branch, but prior to knowing what it was I had all of my back teeth pulled thinking it was a dental issue. Pain can last from a few minutes or linger for day...the not knowing is what keeps me cautious to prevent triggering it. I think my last resort will end up being surgery due to the fact that it has been more frequent and lasting longer. Just scared that it will make it worse in the end. It is such a devastating pain, I don’t want to feel what worse than this would feel like.
My old neurologist kept INSISTING MS doesn’t cause pain so I must be faking the horrible pain I had in my back to get pain pills (that don’t even work with nerve pain and I didn’t want anyway!) even after it put me in the hospital . It made me so angry, I couldn’t believe there was actual skepticism at all with a disease doctors don’t even know the cause of.
Not sure if this was optic neuritis, but my right eye turned blurry and I had to drive depending on my left eye. Because im my right eye looked like there was fog.
So stiff it's painful in arms and shoulders, legs don't feel right, slight itching. I do exercise in bed almost everyday. One hand sometimes will throb the one that is numb. I do take 1 twice a day 1 mg for stiffness.
Hi, I really love your question. Most of my symptoms are paroxysmal (intermittent). Some I may only experience once or for a few days, and others come and go. The thing I look for is how they are presenting, and if I can identify a trigger, for example, tonight my thighs, above my knees, are burning and tingling. This is because I did a long walk today. However, if the sensation gets worse or my thighs become completely numb and/or I start to experience new symptoms, then I will speak with my Neurologist and ask if she wants to assess me for a relapse.
I had optic neuritis 3 years ago, it feels like your eyeball was being pulled out. I am allergic to steroids so I can’t take them. So I have permanent damage there. I constantly see double and upon waking up my left eye is always dark. I can’t see in the dark with that eye.
Question: Does the sensitivity eventually go away after use of narcotics? My doctor prescribed oxycodone not for nerve pain, but severe back pain I get all the time, but if I don’t take it my body is even more sensitive and the air hurts. Also, can TN be on both sides at the same time? I have numbness in my cheeks and jaw pain so I went to the dentist and nothings wrong, but my neurologist isn’t helping. I think they told me it’s prob not TN because it’s both sides...
Yes, after you stop narcotics, over time, the Mu receptors (pain receptors) down-regulate (there will be less of them present). It can take a while however.
HEY DR. B I'M Bed Bound nowadays and I was Finally Diagnosed with MS in April of 2023. But I have been truly having Issues for over 20 years. I have INSOMNIA Like Crazy and I can't sleep ever. Could you please Suggest some things I can take over the counter??
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PAIN was the biggest reason my Dx took 18 years (1980-1998)! They said it was NOT an MS symptom.
Thanks again for addressing this topic and thanks to the specialists that finally realized that MS pain is real and the impact that it has.
You are welcome Janeel! #WeHaveMS
Your comment terrifies me. I am 50 years old so I don't have 18 years to give to the diagnostic process. So frustrating that it took so long for you!
@@darlene1187
Darl...
Hello it's divine😏👍💯
A link n
a comment...
N a little sunshine
4 u :)🌠🙃
I'm sorry it's sounds so scary but i too had a long dignosis..
But please don't fret!!!
I hear to promote a calm in that storm for...
We're now at the end of 2019...
That was then and this is now!
And wow how far we have come!
From no meds.
To sorry u can't have it...
To maybe...
To ahh I guess so..
To two
Then there were 3...
And then there were many!!
And wow now there's ..
A year .. now..
With plus 20 dmts...
Say what?!
Sweet!
And most times. Even a spinal tap isent even necessary
..less than 20% Dr. B can correct my % if I'm slightly off..
But there's also something new something soon..to promote better m.s. care.. and better quicker dignosis.but plz know every case of m.s. is different I've even heard people call us snowflakes. To say no two are the same. LoL 🙃. And maybe we're a little silly. I know I am.
But... I've linked a video from Ohio health... It's from a Dr. That Dr b works with Dr. Jacqueline. Nicholas. I'm sure she had many fancy titles but she is a neurologist. At Ohio health . Plz click the link..n find her amazing qualifications and her wonderful seminar on n.f.l.
I
give her a thumbs up I think she's funny. And very smart. I love hear talks.
Sorry Dr b. Lol
So.. please smile... I'm sending sunshine ur way... And I'm glad your apart of this village...
N.F.L. #a Ohio health talk about bio markers ... And nfl... Check out this link... As she says not to be confused with football lol..
th-cam.com/video/VT5qF38i008/w-d-xo.html
Sincerely
DIVINE ✍️💕🍂🐤
Aloha Darlene ,
Divine is correct! We have come a LONG way since the 1980s.
MRIs were like a new toy back then.
Although there is still no ONE test to confirm diagnosis, today they have the tools and knowledge to look for what is and what isn’t MS.
Blessings be upon you and your journey!
Smile, it’s just me...Janeel
Aloha Divine!
Thanks for helping comfort Darlene with more understanding of yesterday vs today.
Blessings,
Smile it’s just me
Janeel
You are a gift Dr. Boster. You give so much of yourself and your life to help educate us and support us. I have answered yes...thats it to too much of your information in this live video...on replay. MRI to confirm MS in a few days...with all your info...Im not so nervous about this becoming a reality for me. Thank you.
I am so happy to have found you on You Tube! Your videos are incredibly informative-no matter what format you use! Thank you!
The hug to me is like a boa constrictor wrapping around me while I'm trying to breathe through one of those tiny coffee stir straws.
I truly believe STRESS is the #1 reason for MS. I lived 20 years like a rubber band pulled tight, then was dx'd with MS.
Everyone can see it on my arms. They have huge permanent and reoccurring nodules from the insane itching. My arms look so bad, people think I was a drug addict. Makes me so sad.
But, your information and amazing attitude help keep me educated and your personality makes me happy.
Thank You so much for all the time you take to share this information.
It’s like having a doctor that takes extra time with you !!
Thanks again,
☮️💟&🦄’s
Julie
I totally give that answer to people that say to me (especially when i take out the handicapped placard) "You don't look handicapped".... i reply "and you don't look ignorant, yet here we are!" I appreciate your efforts here to explain to your patients... enjoying watching your persona evolution on the videos too...
Cant say thank you enough. What you give to this community is so much more than we could reasonably ask of you. You take your free time to help people who really dont have many helpful resources. Its amazing. You are amazing. Please dont push yourself beyond a reasonable level. ❤ We treasure you and want you to also take care of yourself.
Honey you look so good...well you don’t look stupid 🤣🤣🤣🤣🤣
Omg....before I knew about the MS hug I’ve been to the ER many, many times thinking I was having a heart attack.
You are so important to the MS community worldwide, thanks for this channel and helping us to understand MS. You fill in the blanks, we need to understand.
Well put. Thanks Dr B for filling in the blanks. So much to learn / know / understand.
MS is just a very bad life roomer we used to live with. Thank you so much for this great explanations and advices on dealing with MS. 💖👍
This works for ALS Patients also. The MS Clinic at Riverside Hospital in Columbus, Ohio also helps with ALS Patients for Baclofen Medicine Pump Inplants and works WONDERFULLY
Hi Dr B, I always miss your live chat sessions but never mind Janet B from England with full glass of water in hand! 😃😃😃😃😃 xxxx
The hug,to me feels like that bear hug from the bully that won’t let you loose to breath"..."....
Thanks for another great live stream Dr Boster. From Australia. I live with trigeminal neuralgia. When it plays up, it feels like someone has punched me in the face. My right nostril will sting like crazy, two front teeth feel like they are being pulled out. I am on a regular medicine, which helps with a large majority of the pain most of the time, thank goodness.
Yes. Dr.B,thank you for validating what we as MS'ers feel but are told it's not your MS explore options with other Specialists. It has been storming here quite a bit,I seem to always experience an onset of pain on days prior. I have TN,lots of meds anything that lets me know my face isn't in a Critical stage is life changing! I just want to be put out of my misery on those days,I can deal with side effects of the medication. The Hug is painful, I can't breathe,my ribs hurt. I would do Optic Neuritis, The Hug any day. Heaven help us to find competent neuros open to all areas of medicine to help us,I wish more doctors were on board with your mindset. Thanks for being here with us to be a guide and influencer!!!
I don’t know if I have ms or not but I got all the symptoms. Last week when I was brushing my teeth my head fell in the sink. I grabbed my head with my hands and lift it back because I couldn’t control it.
I noticed when i have a very high stress day I have more trigeminal nerve pain and random stabbing jab pains any place on my body.
I am learning that exercise is one of best strategies to treat pain in me legs, hips and buttocks.
However, I am also learning that I need to know my limits; over do it and I will suffer with parasthesia and pain so severe that I stuggle to stand and walk.
Yet despite the severity of pain, it is the simple things that are most effective like rest, heat packs and Tylenol.
Hi Dr Boster, please may I ask for a video on gut mobility issues leading to SIBO in MS. Slow digestion and Small intestinal bacterial overgrowth have been shown prevalent in MS patients. If you have the time, please may I ask you for some information with regards to this? Thank you for all you do for the MS community.
This format is my preference. It is more focused and packs more education and information into the videos, because you are able to complete your thoughts and provide more concise information on the topic, without distraction of reading and answering questions. Answering questions at the end is the the icing on the cake. I understand your passion in wanting to connect with your viewers and your village, but as the village is rapidly growing (yeah, I'm so happy about that) I think starting out with a narrow topic and educating us first, and then jumping to questions after, works really well. Maybe do an "Ask me Anything" video every once in while for fun. Just my opinion. (everyone's a producer all of a sudden lol). That being said, I appreciate everything you do, and I'll take whatever you so graciously publish for us ! Your time and expertise is so very valuable and I am grateful for all you give us in your free time!
Aqua aerobics is an excellent way to exercise. I’m a retired certified fitness instructor and taught many of these classes. I can say without a shadow of a doubt that this is a double perk because your body stays cool and you’re body weight in the water endures waaaay less impact. There are also many exercise devices you can purchase such as styrofoam hand weights, an abdominal belt etc. I have a pool and exercise in it everyday.
Thank you for tackling this subject. I have MS & Fibromyalgia, so pain is daily for me. I love the I drink you drink!!
Yes, MS hurts! Every dang day! Yes, it is an invisible disease because, we look “ok”! Thank you for helping us up our game! 🤗
YW Carla! "But honey, you look so good!"
Thank you for sharing all of these. I would like to know more about NMMO, please.
New format is the best. Great for finding the information at a later date. Thank you for all you do!
North Texas appreciates YOU - Hubs Calls me a Camel re: my love for water !❣️
Thank you so much for this video as well as your series decoding neurological exams! After years of bouncing from doctor to doctor for the pain, numbness, etc. from what I have been wrongly told is due to my arthritis, your videos have prompted me to finally see a neurologist since MS seems a very likely diagnosis for me based on my symptoms. Your explanation of what I’ve been experiencing is spot-on and I am finally starting to put pieces together. Thank you so much.
I like listening to you then Q/A
I have a great time with spasticity, all shapes and sizes. And I have been learning to deal with it in but I think, the baclophen it’s helping my MS hug
I take 20 mg of Baclofen 4X/day and I still get spasms. Sooooo fed up.
I am in Egypt, and always miss your live broadcasts, but this is ok. I can still see it later, like now. So appreciate you, Dr. B.
Optic neuritis in the right eye with the same description as you described Optic neuritis In the left eye with no pain with more damage than the right eye and almost lost vision
The early treatment of a migraine is good to know. A migraine is usually the best headache I can get so I very seldom try to treat it
Thank you for your livecast. Doug coffee in hand from Lyndhurst, Ohio.
Hi Doc! Jennifer from HOTlanta. 100 degrees today. I am melting!
Jennifer Cruickshank I couldn’t take the heat, bless your heart
I have so many types of pain from optic neuritis to sharp stabbing pain, pulling pain, jolting pain, etc. For optic neuritis, it felt like someone stabbed my eye sharply, then it dulled to throbbing pain, to something like my eye is pulled out of its socket. Sometimes pain means an electrical jolt from my neck to my elbow, fingers. It can even mean pain on both knees as I walk or climb the stairs. It's hard to explain, even my closest family members (except husband) won't believe me, even from the start. This made me feel better, since we talk about it together. Mine is active, even with dmd.
Dr. B I love this new format but I vote for whatever works best for YOU! This was such a great topic and I learned a lot!
Just an idea of a different way to try things - I was thinking if you made an informational video on a topic (ex: pain) we could watch it and post all of our questions in the comments. Then a week or so later you could do a follow up (live or pre recorded) video answering our questions related to that topic. That way you would have time to preview the questions. Just a thought. Again, we just appreciate your time so whatever works best for you :)
Good to have a lecture before Q&A. We told our neurologist about you and he liked what he saw. Nancy and Steve in Australia.
Just saw my neuro ophthalmologist today because I thought I had optic neuritis again. This time I have uveitis. Both are very painful. Feels like my eyeball is throbbing and pulsating. Similiar to a migraine headache but in the eye.
Did he cover your eye and tell you to keep the light out of your eye? Very painful. Did you try Prednizone eye ointment, that helped me, and warm water compreses on my eye helped too.
Been having dental pain and scalp itching. Sometimes it feels like ants crawling up my arms...ugh! Also, noticed I am having problems with grammatical writing. Didn't have it before but now is becoming challenging.
Michelle L OMG!!! I have all of that too!!! Finding words or even articulating my thoughts is also a huge problem....
Hi there from Oxford UK. Thanks for all your support, advice and guidance. Sorry to miss you live but interested to see new format.
What a lovely, gentle, memorable place Oxford is! I was there a looong time ago, Alison - 1967! I relished every minute, especially Oxford U. itself ❤️❤️❤️/ Be well.
Optic neuritis was the symptom that brought my dx. I went completely blind. It hurt. It felt like someone was trying to gouge my eye out with a spoon; apparently the person with spoon was very determined and unsuccessful.
That was sixteen months ago. My eye still aches and my vision has not returned beyond shadows.
Having MS hug is very annoying! Had it twice.
Hi!!! Dr. Boster 🤩 You are so awesome!!!! I am in FL!!! I live in pain and my pain is affecting my fatigue and my sleep... a vicious horrid cycle! I keep sharing you with other people with MS!
TN- i was going to the dentist for five years looking for a cracked tooth 🦷
Spasticity is my worst enemy. Cramps are a nightmare. It happens in my legs, hands, back and feet. Sometimes so bad hubby has to massage and work the cramp out, while I'm crying begging him to make it stop. A couple of times it's been so bad I've had to go to ER.
Hi DR B
I am samah from EGYPT
thank you 🌹
PAIN, my middle name. I have had all of these pain syndromes in my 38 years of MS. Just started CBD Hemp Oil, with no relief yet, but hope it will help. A Radio Frequency Ablation is scheduled for Aug 13 for my lumbar pain. I can tell you all about PAIN.
Love the French greeting!!! You’re multi talented!
Thank you for another great video! I'm from Kennewick, WA.
I didn't know I had MS or optic neuritus. Looking back I had bad eye pain but thought it was due to working long hours in front of a computer. MRI and evoked potentials test confirmed diagnosis.
Dr. B...can you talk about evoked potentials?
I've got really bad pain in my hip and kidney area the past few days .I am really struggling with my mobility walking up and down the stairs .
Hi Aaron. My optic neurotistist started with blurry vision and rolling eyes moving left to right.
Dr. Dr. Aaron🤓🎤🖌☕
What an awesome new format.... ALMOST 12k strong wait...
What? Were! 12k ....sweet!🌠🌠🌠🐾🐥
and sprouting new members everyday.. it very much reminds me "THE GROWING tree".. or maybe the grass below it is a bunch of these intricate puzzle pieces that only fit if we're all together...a.e. if any member leaves we notice... we loose water... we just won't grow right... and for.all these reasons I'd say we're #kickmsvillagestrong! 🐾
After all ..Its already a well oiled machine in its own right.and every single one of you are the reasons......But to be honest I'd be just as happy with being the absolute smallest part of it... As long as it kept moving.
Sincerely
Divine!🖌🤗🐥
#WeHaveMS
My optic neuritis pain - I had a sharp pain on the side of my head on a Friday night and it came with a big headache. I took headache medicine and went to bed. I woke up without 60% of the vision in my right eye and the side of my head hurt like post migraine.
I have had optic neuritis. It started with bi-lateral wall eyed INO
I have a video I can send to you. The Neuro Opthmologist from UCI videoed it. He said it was beyond text book, but is so rare, he wanted to share it with his students. If you want to see it, where should I email it to?
Can you explain a bit why so many neurologists and doctors don’t think MS causes pain? How did this rumor get started and how can we change it?
Sharing a personal “Pain Hack”
Step 1) Cool Shower, with Motivating Music, and a good old fashion cry.
Brings down core body temp - puts you in a better mood - relieves stress that is beyond your immediate control.
Step 2) Do something positive for someone else. But make it do-able in that moment.
Examples: Order a couple of pizzas and have them delivered to a homeless shelter - Say a prayer for someone in need - Write a letter to an old friend. Etc.
Step 3) Rest knowing that you are important and are still a positive contributor to this world, in the you that you are right now. Drinks some fluids and watch a comedy. Laughter helps!
Step 4
Never lose sight of your goals. Sure, you may have to take some time out and break them into smaller 'bite size' chunks but where there is a will, there is always a way!
For instance, 3 months ago I started chair exercises like marching on the spot. Today, I walked the length of my street (~ 1/3 mile) independently; Cane in hand but not in use! 🚶♀️
Aloha Fiona!!
Once again, Thank you for adding on to my comment.
You complete me!
Smile, it’s just me
Liked that, Janeel. Thanks from Jerusalem.
Janeel Hew I thought you said Mantavani music. Blame my eyesight for the mistake but it motivational in a way.
Aloha Doug!
Eyesight- totally get it.
I love all types of music...never heard of Mantavani before.
Do you have a link of it to share with me?
Smile, it’s just me, Janeel
Hi Dr.booster I enjoy watching you an learning from your video. Texting from Fresno
Thank you so much for this specific topic today, it confirmed that I’m not imagining these things. This live stream could have been called “MS hurts Susan’ lol
Hi! Dr Boster 🤩 I hope you see this comment on which platform I like better... I love the Q&A i learn so much about MS with those live Q&A's but I also like this platform I know you are super busy and yet you make time for this channel but is there a way that you could do both platforms? Thank you again!!! I am spreading on my instagram page that you have a TH-cam channel and how much your channel has helped me in my MS journey!!! THANK YOU! 💞
Colorado!
Thank You Dr. Boster!! Great video!! Love that you are doing this!!
I live in Alberta, Canada
The pain I had with my optic neuritis wasn't just in my eye it was in my head aswell like a headache. My eye felt stiff too. I only have light perception in my worst affected eye now. I had steroids and plasma exchange to speed my recovery as both eyes were affected at the same time. My remaining vision is distorted and at my last OCT scan my consultant said the blind eye is permanent . I have visual field defect in my good eye. I am finding Fluoxetine helpful for the pain I experience all over, it doesn't go away completely but its bearable.
How do I get rid of lower back ache. It’s been killing for five years. I do stretches for my ms. Don’t eat amazingly take ocrevus. Am miserable.
i got diagnosed with MS by having optic neuritis.
for me, i had pain that was 1/10 {10 being extreme pain} . i had this pain for 2 days untill all of a sudden it got worse 3/10. next thing i know the following morning i lost more then half the vision in that eye.
I’m on lyrics I’m in Idaho and missed your live I’m now subscribed I’ve had multiple sclerosis since 1997 and recently diagnosed with SPMS and I’m not getting around very well seems like I’ve gotten worse since I had an abscess that was MRSA in 2018. I’m going to get some MitoQ to try and see if it help me.
Finally one I can see I have never had a UTI. I think it’s because I drink 4 L of water a day
Ahhh I can’t believe I missed this stream! I can see already this was a good one
It was great. Thankfully we can watch it whenever we want, however many times we need.👍
Meloney Parker, yes! That’s what’s great! How are you?
Put it this way I'd rather give birth again. My optic neuritis was excruciating and anything hot or cold touching it made it worse. Because of this and having tn 6 months later I'm seeing a neurologist Monday query ms. I was told that my on was classed as my first episode by opthalmologist and I had 50/50 chance of having it.
Great video
Glad you found it helpful
I’ve had Optic Neuritis twice and I’d rather give birth to an elephant. The pain is the worst pain I ever had in my life. My MS is on the left side and so the left side of my face went completely numb along with visual loss and severe pain in that eye.
Hi from Australia Biill here!
I'm from Maine!
Hi from Texas
Phx area, Buckeye AZ
Okay so this is a lot...
I use Cannabis all the time. CBD during the day helps with pain, neuropathic pain, numbness, keeps me calm. At night I do not sleep well, so I take a 1:1 which is CBD and THC mix, not only does it help me sleep, spasms, stress is bye bye but helps all the same as the CBD for me. Even migraines. I have a golden ratio mix that I use for the really bad days which has CBD, THC, THCA, CBDA, CBGA, CBC, CBG in it...this is specific to people that have nerve pain. I use a D-8 THC that helps so much with out the psychoactive properties of normal THC, also know as D-9 THC. All are either capsules or edibles.
Daily I take... turmeric, fish oil, multivit, Boswellia, vitd.
I also follow an antinflammatory diet. This is not a standard fad diet that can have unhealthy habits. It more combines the heart association recommendations and the Mediterranean diet. There is a lot of evidence out there on the NIH site of how food causes inflammation. Here is one article which goes down to the molecular structure of our bodies cell types and the influence food has on MS patients.. www.ncbi.nlm.nih.gov/pmc/articles/PMC4342365/
So with all these I have been able to get rid of ALL, except for an rare tylenol or motrin, medication to help with all the symptoms above.
My Disease Mod Drug is now Ocrevus. I did my first dose about 3 weeks ago. It made my hands and feet burn and they are numb a lot. This was something I rarely experienced at this extreme level! All the above methods I use help me.
I do use Adderall XR 20mg, but I have had ADD for a long time before I was diagnosed with MS. That does help with the fatigue and allows me to get through the day. I also have Hashimoto's, and have had this since I was a senior in high school, so I use Synthroid.
My stress level is way more then many I know, my husband has a brain stem tumor and will never work again, cannot write, issues seeing, speaking, tremors, walking, spinothymatic pain all ataxia..so I am the wife, the husband, the mom and dad to two children one 5 yr old boy the other 12yr old daughter (going on 18, lol)...I work full time and I am his care giver, the list goes on....my mom had 2 heart attacks recently, my brother was in a serious car accident where his gf died....there is more but you get the idea. My point the Cannabis helps and I manage okay.
Dr Boster, I truly love your channel and I know this works for me but it might not for others, but want to share what I do.
MMJ helps me as well. Thank you for the detailed share on the subject.
I would like to send hugs through the internet to you. No one should have so much on their plate. I have a lot of respect for you in your journey. ❤ Each of our experiences are unique, and those experiences are pushing each of us to our limits. It is my hope that you can find help with these individual challenges. Try looking into NMSS assistance or with the OMS group. Both groups have assistance programs available.
Can optic neuritis resolve on its own? Or if you take NSAIDs relatively regularly for musculoskeletal pain (no known cause yet.. full body, muscles and bones head to toe).. will it calm down the inflammation enough for pain to go away? How long does it last? Ha! Lots of questions but I'm curious based on things I've have had happen off and on.
Probably not a question you can answer. But why is it some days I wake up in agony. Like sobbing in pain, sensitive to light. But once I'm fully awake after a lot of coaxing it's back to my normal levels. It's soo bizarre and also very upsetting when I have to do things yet have to spend anything up to an hour bring myself round to the awake world.
Bartlett TN
I'm from Wyoming
O. N. I find all sorts of issues, but always at it’s worse when I’m tired:
Hello fom Ireland
Quick question if you happen to read this,
So, if I’m going to cut out sugar, can I replace it with honey or some people use Agave syrup,
That would be helpful to know, it would make the transition easier, since so many of us are just used to using sugar by default, and it’s in so many foods. Ahhhhhh, does this mean also, to read food labels and eliminate all processed foods with sugar ? And what about “fruit ?” Some of those contain sugar.
Ok...... so as I got writing I had more than one “quick question “
go figure 😉
Any knowledge would be helpful, either from you, or anyone else in n this community that has sound knowledge about this.
As Always, thank you
SO much for your time.
☮️💟&🦄’s
I have Paresthesia in both feet. Left foot wayyyyyyy worse then right. I have a lesion on my t spine. Left foot will burst into flames when I am tired or over heated. Then I get spaghetti legs. Other than that, I am fine. So I guess im winning. Wait i had M.S.hug too. I would say it is the worse cramp you have ever had. It squeezes the breath out of you. Baclofen worked for me, made me tired and feel like I was hungover.
John Kilman hi I have a lesion
From my T10-T12. I have exactly the same pain as you. Also have had MS hug. You’re the first person who has exactly what I have.
@@lenorelegnetti4241 I was diagnosed in 2018 at 52yo...for four years I was told that I had sciatica...i never had pain, just my left leg went numb...i had 3 caudal blocks and got feeling back, except for my left foot...in those four years my right foot, just on the bottom, has fallen asleep...i lift weights 5 days a week and I believe it has helped..big time, but left foot still burst into flames (foot gets really hot and feels swollen) when tired. Also when I over do it my legs become spaghetti legs, i loose my balance and trip over air.
John Kilman interesting. I’m 62 now and it will be my ten year anniversary in November, so I was diagnosed at the same age as you. The good news is, I’ve never had another flare and am still stable. Hopefully this will be true for you also.
@@lenorelegnetti4241
Hi, I was going to say me too!
I am also another "lefty" with hot/burning/cold sensations in my left foot more than my right. Not sure about the MS Hug: heart, GIT and thoracic spine investigations all clear...I guess I am just weird! 😕
I guess I'm pretty fortunate compared to the rest of the village here, I only "kvetched" about neck pain if I sit in a normal chair for more than 20 minutes. Also about bowel movements, which those who surround and love me don't really want to hear about, but that's the subject of another clip. I do prefer individual subject format to live Q&A format, the shorter the better. Writing at 3AM Saturday night from the home of my daughter in Lod, mom of 9 of the 22 grandchildren, who seems to be wondering why, if I'm so sick, I don't go to sleep already. ;-)
New Jersey!
Trigeminal Neuralgia is my worse pain symptom!
I am on the highest dose for all of my Epilepsy meds already, yet the slightest breeze to my face can trigger it and lay me out! Most often it is the top branch, but prior to knowing what it was I had all of my back teeth pulled thinking it was a dental issue.
Pain can last from a few minutes or linger for day...the not knowing is what keeps me cautious to prevent triggering it.
I think my last resort will end up being surgery due to the fact that it has been more frequent and lasting longer. Just scared that it will make it worse in the end. It is such a devastating pain, I don’t want to feel what worse than this would feel like.
I'm not formilar with water in a glass bottle. Just curious what type of water do you drink.
Alicia T San pellegrino
My old neurologist kept INSISTING MS doesn’t cause pain so I must be faking the horrible pain I had in my back to get pain pills (that don’t even work with nerve pain and I didn’t want anyway!) even after it put me in the hospital . It made me so angry, I couldn’t believe there was actual skepticism at all with a disease doctors don’t even know the cause of.
Lexington.Kentucky
Howdy
Sharing
Not sure if this was optic neuritis, but my right eye turned blurry and I had to drive depending on my left eye. Because im my right eye looked like there was fog.
So stiff it's painful in arms and shoulders, legs don't feel right, slight itching. I do exercise in bed almost everyday. One hand sometimes will throb the one that is numb. I do take 1 twice a day 1 mg for stiffness.
About my last question: So how can we know if it is a relapse or a paroxysmal symptoms without an MRI?
Hi,
I really love your question. Most of my symptoms are paroxysmal (intermittent). Some I may only experience once or for a few days, and others come and go. The thing I look for is how they are presenting, and if I can identify a trigger, for example, tonight my thighs, above my knees, are burning and tingling. This is because I did a long walk today. However, if the sensation gets worse or my thighs become completely numb and/or I start to experience new symptoms, then I will speak with my Neurologist and ask if she wants to assess me for a relapse.
I had optic neuritis 3 years ago, it feels like your eyeball was being pulled out. I am allergic to steroids so I can’t take them. So I have permanent damage there. I constantly see double and upon waking up my left eye is always dark. I can’t see in the dark with that eye.
Question: Does the sensitivity eventually go away after use of narcotics? My doctor prescribed oxycodone not for nerve pain, but severe back pain I get all the time, but if I don’t take it my body is even more sensitive and the air hurts. Also, can TN be on both sides at the same time? I have numbness in my cheeks and jaw pain so I went to the dentist and nothings wrong, but my neurologist isn’t helping. I think they told me it’s prob not TN because it’s both sides...
Yes, after you stop narcotics, over time, the Mu receptors (pain receptors) down-regulate (there will be less of them present). It can take a while however.
Aaron Boster MD Thank you! I appreciate it!
Krissy from Lawrenceburg TN
HEY DR. B I'M Bed Bound nowadays and I was Finally Diagnosed with MS in April of 2023. But I have been truly having Issues for over 20 years. I have INSOMNIA Like Crazy and I can't sleep ever. Could you please Suggest some things I can take over the counter??
I Watch You Always Thank you for Everything ❤ Krissy Lawrenceburg TN