Відео

I havnt been diagnosed yet but I have had some mris which showed progressive worsening of white spots on my brain. I also have pins and needles in my legs and I have horrible stiffness in my legs and hips. Sometimes I have trouble getting in a car because my neck wont bend enough to get my head in. Im pretty tall at 6' 6". I have to get out and put my head in first. I also have pains usually in my feet where I get an intense pain but it only lasts about 5 or 10 seconds then it goes away. Lately I have been having debilitating fatigue to where sometimes I can hardly get out of bed. I also have they called myoclonis jerks where i have whole body twitches and sometimes they are triggered by thinking about something I need to do. Lately I also have almost constant headache and sometimes severe.

Merry Christmas Cliff!! Hope you get better soon. I started kesimpta this month, as i told you before, so im very interested in you journey. Best wishes to others with ms, dont stress out this season. Stress is not good for us especially. Happy birthday to Jesus!!

Thank you for sharing, so brave. It takes time to get used to living with ms. Be patient and kind to yourself. Happy holidays gentlemen.

I already shared Dr Boster's PIRA video on another comment so won't be repetitive. You know about him already but this is another Neuro in his caliber that collaborates with him some. This one is an interview with yet another great neuro without as much You Tube Content. All good info but at 17 min in he starts into some interesting findings. The B cell killers aren't doing as well as expected at preventing progression. They are good for stopping new attacks- so then there is less to progress- but not at stopping progression on the existing lesions. They aren't done just when initially experienced. Nothing at this point really is helping but is being worked on. Best to live right, rest, stay active, etc. and talk to your neuro and keep your eye on research www.youtube.com/@DrBrandonBeaber/search?query=hauser

My husband used to be a programmer that worked for a company that made defibrillators and he worked on that code and when I mentioned that I was surprised that more people in the FB group I help moderate (NMSS community) didn't mention more heart issues and he said that's because the heart has it's own nervous system. It doesn't trust the CNS ;-0 "The nervous system used by the heart is the autonomic nervous system; specifically, the sympathetic and parasympathetic branches of the autonomic nervous system control the heart rate and contractility of the cardiac muscle, allowing the body to adjust its heart function based on different situations like exercise or rest."

I've had MS for close to 20 years and have invested a lot of time into understanding it better. I know you are on Kesimpta, a B Cell Killer. One of the impacts is you will be more prone to infection and also/especially upper respiratory. Doubt you can give up the highly effective DMT this early in your disease course (after 7 years on Ocrevus and being stable that entire time I have deescalated to Aubagio (as recommended in Dr Beaber and Dr Boster videos). Just for you to be aware of. Make sure to let your neuro know.

"It's a relationship" More like an abusive relationship that should warrant a restraining order.

thx

Thank you so much for speaking with me Cliff!! I can’t say how much I appreciate you and your channel!! ❤❤❤

Oh Cliff, I’m so sorry to hear what an awful week you have had. I’m so glad your wife is so caring and she sounds like she’s a good foil for you when you’re not feeling good and she tries to get you laughing. You have no idea how lucky you are to have someone like that in your life. I’ve never had the “MS Hug”, it sounds really scary. Yes, unfortunately as we age our MS symptoms get worse when MRI’s show there are no real active lesions. I’ve been going through this for a couple of years and have now been diagnosed with Secondary Progressive MS, which we all tend to get to as we age. My cog fog is through the roof these days and the fatigue is happening more and more, but no actual flares as such. That’s just what happens after 40 plus years of this disease rampaging through my body. I’ll be 63 tomorrow and I just need to rest when I need to and take advantage of the good days when they happen. I’m wishing you a very “uneventful” holiday season and may love and family make it perfect. Lots of love from Shelley in Aus ❤

There ya go, always ahead of the game 😅

Now can we clear out the dining room? Lolol

Phew you had an adventure! :/ I haven't had any mri progression in the past couple of years, but I too have had "worsening" symptoms. What I've been told is that maybe it is from the past damage that was done, some symptoms lag behind the actual formation of lesions. I've got "too many to count" small brain lesions and three spinal ones! I appreciate you reminding me that it can be part of the disease to not always be able to manage your emotional responses. It is super frustrating to me when I can't seem to hold it together while going through some ick MS symptom. Hope you are doing better and the ms hug stays away!

Hope you feel better soon!

This video is useful for everyone with MS but it is especially important for newly diagnosed people like me who would be inclined to blame every symptom we have on MS instead of seeking treatment as it may be something not related to MS at all.

I’m glad that you are ok, and am so proud of you for your continuous dedication to documenting your experiences and sharing with us. Thank you for all you do! Hope we can talk soon :)

Thanks for sharing your story

Hi Cliff I’ve had MS for thirty years. Mine is stable, lesion wise, but yes my symptoms are getting worse, but some things are better. The spasticity that has tied me up in knots has abated a bit but when I do get them it’s a charley horse in pick your muscle.

My Rav4 is my go to car. OK on mileage (32 mpg), has heated seats (so spasticity isn't kicked off in the winter), high enough so I can get in and out easily, GPS so I don't get lost/confused when driving a new place and the seat and adjustments are comfortable for me. Good price point too! My daughters Mazda SUV has a plushier seat and I don't mind it at all...SUV for me all the way

It’s so ironic, today i texted my son to tell him that he should write down everything that he is going through because I want to really understand what he is going through. His next appointment is next month so I really want to make sure she knows what’s is going on and here I see this comes across my screen. Thanks to both of you🫂

Thanks Matt for sharing this. This is a great and useful resource for people with MS and I hope word of it spreads in the MS community.

Loved this one Cliff, especially with Amelia the Wonder Dog. Oh yes, the comb over looked fab, almost as good as the long haired singer last video! I hope you, Amelia and your family have a wonderful Christmas and New Year. It’s hot and muggy here in Aus but I’m getting through the days by thinking about Autumn in a few months time. Take care Grandpa and have yourself a ho ho ho great weekend from Shell in Australia 🎅👍❤️

😂 omg Amelia didn't approve of this story😂

Hoka are my go to. I never heard of them until a few years ago when a nurse friend recommended them. They seem to be the sneaker of choice for most nurses that are on their feet all day and for good reason. Wearing them is like walking on pillows. They're a little expensive but worth it. She also recommended OnCloud but I haven't tried them yet.

Thank you for sharing!!! I’m starting and I’m so nervous 😬😬 I have a question do you have pain during the procedure or do you feel anything? And is it better to have it done in the abdomen or in the legs? Than you!

Catching up on your videos. It is interesting to hear about MS from someone recently diagnosed. I was Dx in 2005 and was in the RRMS stage for like the first 8 years. The shot looks similar to the Autojet that is used with Copaxone and Rebif. I took those prior to starting Ocrevus when it came available. The shots ended up breaking down my derma layer in the injection site areas and I got big welts after the shots and over time developed hard knots under the skin. I started to dread "injection night". I always did them at night as I'd feel a bit off afterwards- especially with Rebif. The dread was so bad that when Ocrevus came available with a twice a year infusion- sit in a comfy chair and mess around on my laptop for a few hours? no problem! I brought some snacks and fun or work to do. I'd get half the steroids once I settled into receiving it and went with oral Zyrtec as I don't like the dopey drugged feeling from Benadryl and I had to drive 45 minutes home. Appreciate your perspective- fellow nerd ;-)

Just diagnosed with Clinically Isolated Syndrome in October after having an attack back in February. Neurologist recommended Kesimpta as being most effective at slowing or even halting CIS from potentially turning into relapsing MS. Have no problem taking it, it's just the stress of dealing with all the bureaucracy of setting up getting it. I'm more stressed about dealing with all the paperwork getting set up to get it. But I'm hoping by mid December I will be taking my first one.

Feel the pinch?

Im off kisempta bc of side effects next day after shot felt like a got hit by a bus and more upper respiratory infections. Asked nero and i both agreed i haven't any flares in over 10yrs. And im also 64. So im going off

I’m on Kesimpta 1year and it’s definitely not working for me. I feel a severe progression, problems walking and using my hands. I’m switching to ocrelizumab hoping it will be better

Last Leg Up - “Your final lifeline to pants-related dignity.”

I agree with your statement, I've felt this a lot and this is up to 75%. As for the 25% of disagreement, no you are not losing your mind, it's other factors that makes our situation perplexed. YES, I feel that MS is the loneliest disease because not all our friends/relatives around us have it and they may not fully understand our situation, especially when we can't join them in social activities due to fatigue or other MS-related health issues including difficulties in mobility. NO in an extent because even among people with MS there can be great differences in personality and interests and we can still feel isolated sometimes or even misunderstood & misjudged! I've felt that before when I was in a local MS society last year when a person I thought I was getting along with blurted out that I was too much of a cry-baby for my situation (me having to deal with my diagnosis at that time and she being at the 2nd year after her Dx) and that there are worse states than just having MS (like her own). That slowly made me feel I could not show my vulnerable side anymore because I felt I was going mad and because a few other people in that society seemed to hold that belief and I couldn't get sufficient mental support I decided to quit. If it weren't for my personal research (I thank Stoicism for this) and my pursuit for hobbies afterwards , I would get severely depressed... MS does not fully define us, we are still ourselves with some traits being even enhanced according to the circumstances as I've witnessed. Furthermore, there is a lot of toxic positivity around that still ruins interpersonal relationships (you know, people ghosting you when you face hard times and not just because of health...). And we live in an era when loneliness has become a great epidemic, if not a pandemic. And MS, like other autoimmune diseases and cancer, enhances it!

I don't like injecting in my legs either. I alternate arms.

I’m 28 years old and have been on Kesimpta for 9 months following my diagnosis. This is my first treatment, and my most recent MRI, done less than a month ago, shows stable results with no new lesions. In Italy, the cost of the medication is fully covered by the national health service, and I go to the hospital pharmacy once a month to pick it up. I could collect multiple doses at once, but I prefer to have them stored in their refrigerators. My immunoglobulin levels are the same as they were before starting treatment, and I haven’t even caught a cold. I have almost no symptoms, except for the occasional mild facial paresthesia (symptom that led me to schedule the first MRI prior to the diagnosis, thankfully it has reduced a lot since then) . I do believe that Kesimpta works best for treatment-naive patients on their first therapy. Thank you for your videos, which continue to encourage me on this long journey!

I was hoping for an update on the pants puller upper machine🥺. Oh yeah, and I am also glad the Kesimpta is working for you overall.

I've been on it since April of 2024. It makes me tired the week after I do my injection(didn't realize that the meds was also making me tired every day just thought it was base MS). I also have a needle phobia and I get way too many blood draws a year ..not to even mention the spinal tap. Ugh!!!!!!!

thx

Thanks for sharing! My son has been taking Kesimpta since he was diagnosed 2years ago. He is; 1:highly fatigued 2:Easy to pick up infection (Kesimpta suppresses the immune system) he has to take vitamins to counteract that. His last Neurologist appointment showed that one of the lesions on his brain was significantly smaller. Also there were no new ones. Hoping and praying for more positive news on his next appointment.

I don't know if you've heard about and/or considered Mavenclad, but if you're an insurance will cover it I don't remember the exact statistics but it was either 40% of people get 70% better or 70% of people get 40% better. Either way pretty impressive. I have MS too, but unfortunately my insurance doesn't cover that and I don't qualify for any type of help with that specific drug unfortunately or else I'd be switching myself. I do notice that the doctors heavily suggest infusions though although I have been on oral treatment only for the entire 10 years since I've been diagnosed. I can't necessarily say that his work is well as I would have liked it to, but not everything works for everyone the same way I guess and I myself don't have it in me to get an infusion or give myself a shot so it was basically oral or nothing at all. Best of luck to you.

Ahh Cliff, at least the thought was there hon, and you never know, on a better day you’ll fix it and have a brand new “helper” robot to get your pants on lol. I loved this video, it made me laugh. I had one of those days yesterday and I just wanted to sleep it away, but of course you can’t do that, so like you I did some things to keep my brain awake. Let’s hope next week feels better. Take care and stay happy. Lots of love to you and the family from Shelley xxoo