Відео

I have a really beautiful lovely transfer shower bench which makes it safer I just can't shower right now for Mobility reasons

Guess what. I haven't taken a proper shower in over a year. I use soapy washcloth and a towel and wash my hair in the sink

Hi girls. I am a 58-year-old woman who is diagnosed and she was 6 years old with something called charcot-marie-tooth disease which is very similar in some ways to ms. Christina when you describe your legs I'm looking at mine. The neuropathy pain that I have the drop foot that I have the surgeries I've had throughout my life I've been very challenging to live with. Thank you for being brave enough to create this space. Nobody understands my struggle. It's good to have women who speak up and out about the frustrations that come along with living a life like this.

For the first time in 11 years, I felt like this conversation was with me included. I've never told my friends about my MS. I TOTALLY get the shame. Mine is to have this BS disease. MS took my sports TV career. Still in mourning, don't think I'll ever get over it. LOVE you both. ❤

If you don't want to go anywhere then just don't go. Why schedule something if you do not want to go to begin with? Be true to yourself.

Thank you for your podcast. I have been dealing with this by myself. Dx in 2007 but looking back decades, the strange things happening to me were most probably ms. I have have lots of issues lately. Thank you, and I would never dissect yall ever! Very proud of you two. Keep on keeping on! ❤

I was diagnosed with multiple sclerosis in 2016, on my UA-cam I have my only revision so far of my Ms diagnosis story, I want to put something better together but that's what I've got so far to kind of tell you who I am and what I got.

I feel the trying so hard thing. Sounds a lot like me always pushing myself to go go go. I’ve just come to the decision that I’m done hoping to get better but I still have hope that I can adjust to this new normal.

My girlfriend and I both have a ms I'm Darrin Burnette my girlfriend is Jen Carrino we've been together for 15 years. I was diagnosed with MS IN 1995 iwas 17 at the time. Jen was diagnosed in 03.

Will reminds me so much of Andy Kaufman if he had lived. There's a deep emotional intelligence I wasn't expecting.

This story breaks my heart. I will be praying for you, Beau, and your family. God can do miraculous things and He has the power to heal your son. ♥️🙏

Amazing family 😊❤❤

Go momma 💪 ❤❤

One of the things I find the most frustrating is trying to describe to people what you're feeling. Like when I say my feet feel like i'm walking on a bubble, like the bottoms of my feet are a blister, or when I say the insides of my legs are shaking or the tip of my nose tingles.. My worst areas are my feet and lower legs.And I also cannot wear shoes. If I have to wear shoes, I just wear crocs, because they don't touch the tops of my feet, they just touch the bottoms and I can muscle through.

I hate being home not driving it sucks I have pps went when un discovered for 20 years I found out I threw my kidney failing in my real life I was a hairdresser imagine we coming at you with sisors

I've been a homebody for over 20 years, so my new life isnt a huge stretch. For some reason l was never mad or angry or cried about my diagnosis. I DID wonder what l could have done differently(better diet, etc.)

I love you two so much! You’re the group therapy I needed. I love your honest conversations about this damn disease. From talking about bathroom mishaps to just wanting to stay in bed! Before I would always feel like I was being weak if I let MS win. Now I know that it’s not about weakness because we have strength, it’s just MS takes so much and is so hard and it’s so unfair. Thank you so much for being so candid about the crap you feel. I no longer feel like I’m just being a wimp. I really am tired.

❤

Ladies! I love listening to Messy! I have a rare neurological disorder that at times can be so fucking painful that I lie in bed and scream into my pillow. I have beautiful twin 13 year old boys and I'm single. Without my twins to make me feel things ~ humour being the biggest, love, annoyance (they are 13 after all), sarcasm and joy...I don't know if I would be able to ever get out of bed. Today was a whopper painwise, so I did nothing. Luckily Eric and Lister like to cook! Thank you profoundly for your support Christina and Jamie-Lynn. Nerve pain is a cunt and listening to you guys, who so totally get this reality, is more of a blessing than words. ❤Holly

I also cried through this whole episode. Jamie, you are a strong Mama! I am so happy he recovered.

I saw the video of Beau skipping down a hallway of a hospital ... does that mean he's CURRENTLY better and well? Fingers crossed!

Sending out positive vibes to your family 💞

Uggggggg.....My heart was breaking listening to this. I am so sorry you, your boy, and your family are going through this. I will be praying!!!!

I cried through this whole episode and ran upstairs and hugged my kids so tight.

lots of love and prayers

I had a NMO blood test when during one of my attacks I had no new brain lesions (which was typical for me my first 10 years of MS) but when they extended the MRIs found one in the C4/C5 area. Apparently with NMO spinal lesions are more common...so then I could have had NMO instead of MS all along. I was so frustrated that I could have taken years of Copaxone shots for no reason for years- they actually make NMO worse! So the blood test should rule that out. My current neuro says that tests is now automatically given in their MS diagnosis protocol. Amazing this journey with your son- you are an amazing mother and a wonderful member of the MS community- I encourage all to listen to your podcast

I wish you guys were doing this back when I got diagnosed 20 years ago! Love the realness, spiritual/philosophical chats, and the cards at the end. And so it is! ✌️💜🌞

Why arent more people watching this? These pod casts are so good ❤

I agree with Jamie that the relay of that message was really messed up and he's your friend she could have definitely been a little gentle to how's the emotions and you know when you have a friend they are more careful of how they say things to you not being so damn brutal

It really is like dating I do want to say that fighting the correct Ms specialist is really hard. Right now I see Dr Shapiro who is my scleroderma specialist as well. He knows nothing about Ms or neuromyelitis optica. When we get tested for Ms we also get tested for nmo and I tested a severe high positive that no doctor wants to be a part of. I also have six other diseases so I'm going to be seeing a new neurologist she's apparently very well known my doctor for scleroderma told me and that she would probably try to take on my case but the whole thing is not much you can do for me cuz I have six other diseases that can't be treated with the same stuff so it's basically you know just maintaining my shit mess. There hasn't been one treatment but I did find a muscle relaxer meant for Ms and nmo that has been a life changer like can I tell you it's been such an amazing life changer that medication that I actually sleep through the night and I haven't done that in 3 years.

Hey Jamie I just wanted to share my love and support for what you and your son are going through right now. I can only imagine what he's going through and we are as a mom. Just know that I've loved and supported you and Christina for decades and I'm 38 with neuromylitis optica which is the sister disease of MS. It's pretty rapid and severe and I'm very close to dying. But I wanted you guys to know how much I love and absolutely adore you both and just know that you're in my prayers and thoughts I know that doesn't really help much but I'm always here to listen and pray for you guys and know that we're here together

My heart breaks for you both. I'm sorry you can't find peace in this journey. I hope God gives you a moment to refocus and see that you are a light guiding others through something they will also go through. Keep being strong, hug your family and do something today that makes you smile. Do that every day.

Christina you are still beautiful. I'm not being nice...you are. Same for Jamie.

I recently fell and ended up with 5 staples in my head! My kids saw me fall- they helped me up and saw the all the blood- they had to call 911! I never want them to experience another scare like that. I’m using a cane now. And I am seriously considering a helmet, because I know where I fall the most and it’s at home between my house and my car. It’s a busy-thoughts zone for me and I need to be safe.

Just got news of "suspected possible MS" after a brain MRI. My head is reeling right now. This is helping me so much. Thank you for the power, ladies!

I went through all these emotions when fighting cancer.i felt like a burden but at the same time I learn of those with amazing heart.

❤

You both are so much appreciated sharing your journey. I got diagnosed in 2015 with rrms now its ppms. Thank you now i know i am not alone with the monster. Totally unpredictable diesase.

Thanks for this ladies. Really enjoyed it and gave me the laugh in places coz I really need more laughs at the minute. And yes it’s a complete C U N T I’m from the UK 🇬🇧 it’s my favourite word too 😂

Thank you all!!!!

Just wanted to say thank you both, I'm a veteran of 13 years an have M.S. since 2015. I go ups an downs an glad to hear yall stories.

Diagnosed in 2005. I guess Saturday was one of those days. I tripped over the baby/dog gate that's been there for 6 years. I step over it multiple times every day. I have a scrape and bruise on my left knee. Not the greatest place for healing. I have been on disability for several years now. I have been doing everything, I think because I feel like I have to. I have to get better at asking for, and allowing people to help me. I've been doing way too much for way too long. I have to do better for myself. The world won't end if I truly rest. Just need to convince my brain. I'm so exhausted.

I've had this monster 17 years. I know where Christina is at and it will get better. Listen Jamie-Lynn. Okay after 40 neurologist is not necessary. We no their is no correlation between lesions and disability. You can have 40 and be at a 2 on the disability chart, none and be completely disabled. Gut. Remember your "motility" is changing. I push my blind, ms, can have another heart attack due to oxygen problems. I did physical therapy and now I do serious house keeping. And walking when you are legally blind and drunk walking is a work out. I don't trust doctors because I was guinea "pigged" 2 x and didn't realize. When I was diagnosed they did steroids. But I said I don't have cancer, I don't want chemo that may give me cancer. Throwing this out their. Screw the mylen. It's the inflammation that is doing the damage. The tries to make new bath ways, but if there us inflammation in the body part, it's tearing it down. I think that's where research needs to be. One day MS will stand for Mystery Solved. My aunt had it. She passed 10 years ago. Her last 10 years was bed bound unable to do anything. I don't want that. And she was like you and Christina, she had the money to get best care and also in Europe so health care free or you can pay for better. Just keep pushing. I have my 14 year old who has always had a sick mom and my 28 year old who had corporate climbing mom till she was 14. I was in hospital month ago for GI bleed. I have achalasia - fun autoimmune not related to MS. We'll if course the do echo cause if heart, looks good, neurologist and gi. Everything good but neurologist. Dud quick scan and showed chronic shrinking and the lines are deeper. But I don't feel different. Thanks for letting me ramble. I think at the 15 mark point we all go f. It. I got MS and I understand what that means. But I will push myself till I can't. I won't complain. I will accept every new disability and learn how to live with it. I hope Christina gets her butt in gear. Think that happens year 3. Because she is more than MS.

where is their husbands in all this- they hardly mentioned seems like their missing in action to support these lovely ladies

Michael, the way you had no interest in your court case is exactly how l've been with my MS since day 1. I have no interest in it. I see my nuero, get my MRI & take my meds of course, havent had any new spots in years. Keep a positive attitude.

My shame is also my home when people come to visit. There’s just no way that I can keep up on chores with three active kids, two crazy corgi pups (and their hair!), and a husband that works so hard to support us all but is always gone. I think I make my peace with shame and give myself grace for doing my best with this disease but then people come to visit or stop by unexpectedly and it all comes crashing down on me again. I’ve hired help but even that requires me to be around to answer questions, provide direction, and I usually end up doing more than I should. I just can’t seem to figure out a solution.

Loved this episode! Thank you ladies.

Hi Christine i dont have MS but i have so many symptoms since taking chemo.. could this all be related??

Ice packs, ice vest, and cool showers do wonders for painfull, stiff muscles also brings your body temp down. I'm Wishing you both wellness.❤😊

They have motorized wheelchairs that fold up like a baby stroller... I have one but it is heavy and well sadly I haven't used it but twice in two years and the battery is needing replaced and just found out is $400 😞 but it's great and definitely good for fitting in just about any vehicle.