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JohnnyMS
United States
Registrace 7. 10. 2017
Life is not over. I was diagnosed with Multiple Sclerosis in 2012. JohnnyMS is a way for me to share my Multiple Sclerosis journey with others and hopefully give information that will help you on your journey too.
My Goals:
- Connect with MSers and caregivers by sharing my facts
- Share personal experiences
- Life is not over so show it
- Share overcoming MS obstacles
My Goals:
- Connect with MSers and caregivers by sharing my facts
- Share personal experiences
- Life is not over so show it
- Share overcoming MS obstacles
Video
Living with MS: I Don't Want People to Fix It
zhlédnutí 24Před 5 dny
In this video, JohnnyMS shares his experiences living with multiple sclerosis (MS) for 12 years and expresses why he prefers people not to offer remedies or solutions. 00:00 Introduction and Personal Background 00:43 Discussing My MS Experience 02:17 Challenges with Unsolicited Advice 04:09 Family and Friends' Reactions 05:51 Supportive Relationships Multiple Sclerosis Medications I've had: Lem...
How Reducing Inflammation Improved My MS Symptoms
zhlédnutí 24Před 14 dny
Join me as I delve into the topic of chronic inflammation and its wide-ranging impact on MS health. 00:00 Introduction to Inflammation 00:23 The Impact of Chronic Inflammation 01:37 Personal Experiences and Research 02:25 Dietary Changes to Reduce Inflammation 03:21 Challenges and Commitment 03:57 Critique of the Standard American Diet 04:45 The Problem with Sugar and Processed Foods 05:47 Fina...
Adaptive Squat Workouts with MS: Strengthen Your Legs
zhlédnutí 22Před 22 dny
Hello everyone, it's JohnnyMS here! Since being diagnosed with Multiple Sclerosis in 2012, I've been working on various exercises to improve my life despite my leg weakness. In this video, I'll share my personal exercise routine adapted for those with MS. 00:00 Introduction and Personal Background 00:25 Challenges and Focus on Exercise 00:43 Weightlifting and Adjustments 02:01 Research and Insp...
My Scary Night: A Reminder That I Have MS!
zhlédnutí 20Před měsícem
JohnnyMS shares a stark reminder of living with Multiple Sclerosis (MS). Despite not having a relapse in over two years and maintaining some mobility around his house, this particular night challenged his normal routines. 00:00 A Frightening Night: The Unexpected MS Challenge 02:05 Reflections on Living with MS: Adapting to Uncertainty 02:43 Recovery and Gratitude: Navigating the Next Days 03:5...
Life with MS: It Takes Constant Planning!
zhlédnutí 13Před měsícem
JohnnyMS shares his personal experience on how planning plays a significant role in the life of someone living with multiple sclerosis (MS). This in-depth reflection offers insight into the detailed planning and adjustments Johnny and others with MS have to make to manage their condition and maintain a semblance of normalcy in their lives. 00:00 Introduction to Planning with MS 00:29 The Weight...
Walking issues routine. Maybe Baclofen pump or keep Ampyra?
zhlédnutí 35Před 2 měsíci
JohnnyMS shares his personal experience with managing multiple sclerosis (MS), particularly focusing on his morning routine, medication regimen, and the impact of these on his mobility. His narrative provides insights into the daily life of someone managing MS. 00:00 Introduction and Overview of Today's Topics 00:12 My Morning Routine with MS 01:01 The Impact of Ampyra on My Mobility 03:44 Expl...
Managing Memory Loss with Apple Notes
zhlédnutí 17Před 2 měsíci
I’ve had Multiple Sclerosis (MS) since 2012. I've come to understand the significant ways it has impacted my memory. Technology has become an indispensable tool for me. 00:00 Living with MS 00:23 Adapting to Memory Challenges at Work 01:12 Strategies for Remembering: Notes and Recordings 02:13 Leveraging Technology for Personal and Professional Memory Aids 04:49 Navigating Social Interactions w...
Exploring Potential MS Cures: A Personal Perspective
zhlédnutí 10Před 3 měsíci
I was diagnosed with Multiple Sclerosis in 2012. I share my thoughts on the idea of a cure for MS. I discuss three potential types of cures and remain hopeful for the best-case scenario of having a comprehensive cure that addresses all aspects of the disease. 00:00 Introduction to the Journey with MS 00:04 Exploring the Possibility of a Cure for MS 00:27 The Three Potential Types of MS Cures 01...
Navigating Remote Job Search Struggles with Multiple Sclerosis
zhlédnutí 6Před 4 měsíci
I was diagnosed with Multiple Sclerosis in 2012. I discuss my struggles with my current job and share my pursuit of a new remote job. 00:00 Introduction and Current Job Situation 00:23 Challenges in the Current Job 05:07 The Need for a Remote Job 06:04 The Job Search Process and Challenges 08:04 Strategies for Job Search 12:19 Challenges of Hybrid Work 12:42 Conclusion and Future Plans #multipl...
Exploring the Impact of Food with Multiple Sclerosis: My Personal Story
zhlédnutí 42Před 4 měsíci
In this video, I share my personal journey with multiple sclerosis (MS) from my diagnosis in 2012 to my current condition. I highlight my dietary changes as a critical aspect of managing my MS symptoms. 00:00 Introduction and Personal Journey with MS 00:54 Inspiration from Montel Williams and the Fight Against Inflammation 02:01 The Keto Diet and Cutting Out Beer 03:47 The Battle Against Sugar ...
It takes so much planning to do anything with multiple sclerosis
zhlédnutí 36Před 4 měsíci
It takes so much planning to do anything with Multiple Sclerosis. I can still do many things in life but it sometimes isn’t worth the effort. #multiplesclerosis #johnnyms
A new focus on general health with multiple sclerosis
zhlédnutí 17Před 5 měsíci
I have a new found focus on health with Multiple Sclerosis. We can still die of a heart attack or cancer so it’s important that we focus on these items too. #multiplesclerosis #johnnyms
What will we do in retirement with walking issues?
zhlédnutí 14Před 5 měsíci
I am a planner. I have constantly been thinking about the future. Now that I have Multiple Sclerosis / MS, I am quite worried about retiring. #multiplesclerosis #johnnyms
Appreciate Life - I was able to go hunting with MS
zhlédnutí 18Před 6 měsíci
This video is to take a moment to appreciate still being able to do something I did before I was diagnosed with multiple sclerosis. we all have to take advantage of living life because one day we may not be able to with MS limitations. #multiplesclerosis
I found Ampyra for a good price
zhlédnutí 18Před 6 měsíci
I’ve been paying a high price for Ampyra and have found a very reasonable way to buy it. #multiplesclerosis #johnnyms
Who Knew?? #BloodFlowMatters Supplying Oxygen and Nutrients to every Cell along with clearing toxic brain waste, what is the role of CCSVI Venous Hypertension and proper/improved Cerebrospinal flow, impacting neurological symptoms regulating mood and cognitive Senescene Psych issues? #CCSVI #BloodFlowMatters With age, blood flow to the brain decreases b/c blood vessels produce less nitric oxide, a gas that expands blood vessel walls. Such disruptions contribute to changes in cognitive function that occur with age. #Exercise increases nitric oxide & boosts blood flow to the brain. #Urgent #BloodFlowMatters Horizontal sleeping causes Reflux of De-Oxygenized blood towards the stenosed Hypoxic brain, which after years results in MS Sleeping is a Silent threat to mankind! Keep in mind! Arteries are nothing without a Heart, and a Heart is nothing without Veins! Treatment improving Arterial Circulation is permitted and common, all treatments that improves Circulation in Veins are not widely available. #CCSVI So happens CCSVI is a treatable congenital SCIENCE CONFIRMED recognized Medical condition causative factor SO called Multiple Sclerosis & plays part/role 43 other SO called Neurological afflictions according to studies certanly Including along with other mysterious brain diseases with comparable SymptoMS!? Help facilitate Neurovascular Disease Research Best chance for longevity quality of life depends on availability Neurovascular Disease Research Collaboration. '“When we age, one of the common things that happens within our brain is that the blood vessels do become compromised in part because of chronic conditions,” it issaid. “And when that occurs in normal aging, what happens within the brain is … silent strokes.”' As much CCSVI has been Scientifically established to have a role/part in 43 so Neurological afflictions including Dementia and so called MS 'There is evidence to suggest COVID-19 impacts the same blood vessels that feed the brain. If the virus is damaging those vessels, which could speed up aging, this, in turn, means some survivors might be at risk of getting early-onset dementia.' Time for Learning Science #BloodFlowMatters Apparantly nothing else matters critical Healthcare So happens CCSVI a TREATABLE Congenital Science Confirmed Recognized Med Condition STUDIES show causative factor so called Multiple Sclerosis & role/part 43 other SO called Neurological Afflictions Incl. Migraines, Asperger ALS Autism Dementia/Alzheimer's Aphasia Optic Neurtis Tinnitus Transverse Myelitis Ect! facilitate collaboration defining the path forward establishing the understanding and treatment of Neurovascular disease organizing unified clarity in Science knowledge and progress! Critical Healthcare Research addressing Neurovascular/Cardiovascular Disease including Heart & Brain function Amygdala Dopamine/Serotonin related Mental Health Depression Vascular Disease issues! #anxiety #VascularDepressionConsensus FB Group: MultipleStenosisSociety t.co/7JNmFD7W4l Apparently What is the role of CCSVI Venous Hypertension and proper/improved Cerebrospinal Blood flow Impacting circulation and homeostasis balance? #CCSVI #BloodFlowMatters #spasticity #perfusion Horizontal sleeping causes Reflux of De-Oxygenized blood towards the stenosed Hypoxic brain CCSVI is Science Confirmed Recognized Medical Condition STUDIES show causative factor MS Varicose Veins Fatigue Atrophy Inflammatiion Thyroid issues Covid-19 Heart function matters Cramps Mental Health problems Bowel & Bladder affairs insomnia Senescene Psych unusual behavior! Studies have shown that mostly ineffective often harmful or poorly tolerated Pharmaceuticals that 'TREAT' so called Multiple Sclerosis (M$) $20-40Billion W/a B/yr industry! Living with the Symptoms of Multiple Sclerosis is torturous tortuous tumultuous utter misery! Chronic Cerebrospinal Venous Insufficiency CCSVI/Neurovascular Disease CCSVI is a Treatable Congenital Scientifically Confirmed Recognized Medical Condition, Established Causative Factor in Multiple Sclerosis SymptoMS, AND plays a part 43 other so called Neurological afflictions! CCSVI may be impacting yourself right now and you are unaware! #CCSVI Apparently the Sooner a Person Receives Venous Angioplasty for Treatment of CCSVI! best possibility eliminating cause of MS Symptoms and easing or disappearing! So Called Multiple Sclerosis is more important to some than others Pharmacists, The M$ Society, Neurologists 'so called MS experts', Cane Manufacturing, Scooter and Power Chairs companies, etc Etc ETC So Called Multiple Sclerosis (MS) is/HAS been a MYSTERIOUS elusive UNPROVEN Autoimmune THEORY solely based on SYMPTOMS! STUDIES show Pharmaceuticals That 'TREAT' so called MS only 20-40% Effective DO NOT slow Progression of the Disease Often have Harsh Corrosive Side Effects sometimes DEATH! #CCSVI So Called Multiple Sclerosis (MS) is/HAS been a RUBBISH UNPROVEN Autoimmune THEORY Based Solely on SYMPTOMS! #CCSVI Venous Hypertensiono >microbleedings >iron >free radicals >neurodegeneration #multiplesclerosis M.S. - Mystery Solved Mysterious Autoimmunity = CCSVI Hypertension M.S. - Mystery Solved Mysterious Autoimmunity = CCSVI Neurodegeneration Keep in mind! Also venous hypertension ➡️ impaired CSF absorption ➡️ reduced G Lymphatic drainage ➡️ interstitial peptides accumulation ➡️ neuro inflammation #CCSVI So happens, to mention apparently, Neurogenesis and Homeostasis, are often side effects of Venous Angioplasty treating CCSVI!! Apparently sooner treatment best possiblity Symptoms easing or disappearing. 1/1 #CriticalHealthcare_Research #CCSVI Neurogenesis is the process by which new neurons are formed in the brain. Neurogenesis is crucial when an embryo is developing, but also continues in certain brain regions after birth and throughout our lifespan. qbi.uq.edu.au › brain-basic Homeostasis is an internal feedback system that stabilizes and balances our body's chemistry, so that our organs work smoothly and efficiently with each other. Sickness is the disruption of homeostasis, which doctors treat with medicine.Oct 20, 2016 www.bmj.com› bmj.i5643 Blowing the Whistle on Corrupt Pharmaceutical Industry by Gwen Osen FB Group: MultipleStenosisSociety facebook.com/share/p/jQxWX5Ce6sZgzmky/?mibextid=oFDknk
I highly encourage you to listen to the audio book memoirs of Dave Bexfield Called sit down before reading and it is free on CZcams. It is in near real-time and it Chronicles his mis diagnosis of multiple sclerosis. Start with chapter one, and it will make you realize that the researchers are wasting their time and need to focus that all autoimmune diseases are a bacterial infection. Namely the one found in lyme disease. You don't need to be bitten by an infected tick to get it.. If your diet is making you feel better than great, but remember, multiple sclerosis has been around since the 19th century and it was way before processed foods.
Thanks for the recommendation. I’ll definitely check it out.
Thanks for recommending, interesting and I’m about 2/3 through the audiobook which I found on Spotify. Another interesting podcast I found was Dr. Journal Club and debunking the clinical research conducted by Terry Wahls. czcams.com/video/FHCi17Tw03o/video.htmlsi=IDlPwesF5R0zHemp It’s difficult to trust the mainstream media, Big Pharma and independent researchers as everyone seems to have some form of vested interest and monetary gains at the expense of the people suffering….oh well, that life I guess….
I used to be a member of the. M. S gym online. The exercises are tailored to those with MS. I found it fairly expensive for me and hard to get motivated every day to do them.
I’ve liked their CZcams channel for tips. Free and they give a decent amount.
I have same feelings and do the same. These are my exercises Sit to stand with variations like weight in hand Squats Marching
Good to hear. I’m glad others are also doing these methods. Any other leg exercises you can share?
Leg standing and move to sideways and then back One leg squat if you can One leg stand Legs together while standing Calf raises
I always went to bed with the sheets.Not covering my legs so that my legs would not overheat in the middle of the night. The sit down pee is the best thing ever.
Getting my legs/body too warm was my hunch that caused the balance issues. I’ve tried to stay a cool temp now. Hoping the balance issues stay away!
My doctor actually prescribed ampyra and baclofen. I take ampyra every 12 hours and baclofen as needed. He described baclofen as a muscle relaxer. I have noticed a fairly significant difference in my ability to move when taking ampyra vs when I don’t take it. It does help considerably. I did notice that it does seem to wear off after about 8-10 hours so it may be beneficial to take it sooner than every 12 hours.
I’m glad you found a combo that works for you. It always takes so much “testing” of variables/medications to help your specific body because everyone is different.
Yes, I agree., I plan everything in great detail even to the time.I will put my shoes on, It sucks that we just can't get up and go but it is the life we live and have to adapt to.
It’s exhausting! I have to plan to even go check my mailbox.
I just started ampyra for the second time. I'm taking it at 630am/pm to keep the doses simple. Oddly, i take my baclofen at night before bed to fight muscle spasming so i can sleep. I've had ms since 14, confirmed at 18. It's a rough road.
How has Ampyra been working for you? I’ve heard it doesn’t work for everyone like it does me.
@johnnyms8309 it's working, the ampyra. I've only taken seven pills though. I read it can take up to six weeks to see the full result.
I have MS for almost 3 years I take baclofen 5mg (half tablet) once I wake up its action appears after 30 minutes and lasts for 5 hours then I take the second dose in the afternoon I don’t feel need it at night I never tried Ampyra I want to try it that’s why Im searching and watching videos to know its effects and side effects
I recommend Ampyra. No side effects. I take it twice a day like you. I don’t plan on stopping. Baclofen didn’t do much for me but I tried.
I took the first 10 mg Ampyra last night I feel much better power wise thanks for your advice I feel little dizzy though but it’s tolerable
Great to hear. Give it time and I hope it will work for you like it does for me. Take in the morning and then after lunch for best results.
I've never tried Ampyra. Oral Baclofen did nothing for me, but after getting the recommendation and getting a Baclofen pump, it's been a life changer for me. ❤
For walking symptoms, definitely try Ampyra. I’ve never tried a baclofen pump. Maybe I’ll take a look.
@@johnnyms8309 The pump is used, only for extreme cases of spasticity. It's made a tremendous difference in my life.
Thank you for this info and for the recommendation to experiment!
You bet! Always hoping to share things I learn.
Hi Johny, I also have MS. Been on carnivore for 2 months. Do you feel as if you're recovering on carnivore or has it sort of just been able to manage your symptoms? Im asking for myself because i feel as if i've plateaud in my recovery
It’s definitely helped my symptoms. my walking is way better when carnivore than eating carbs.
You're a great person!!!!
Thank you. I try!
My friends and family know to come to my place instead of me going to their place. It's just too difficult for me. All I can use is my smart scoot to get anywhere. It's kind of sad actually.
I use my smart scoot in situations like Target or Home Depot but I’m luckily ok walking in a short distance like around my house or into a restaurant. If I’m parked in Handicap parking.
My advice would be if you can travel now. Do it now and don't wait.. I never traveled because I was always worried about heat in other countries and bathrooms. Cruising is really good for people with disabilities. You can bring your scooter on board and you don't have to leave the ship if you don't feel up to it..
My travel days via airplane may be tough. I went to Hawaii and took my scooter. It went ok but I had to pass on many events. I’ll look into a Cruise with a scooter.
Thank you so much. Im new to this and a daily struggle.😢🙏🏻
Glad it was helpful!
I feel exactly how you do, im new to this and it so hard.😢
I’ve gotten to a point where I don’t mind a luke warm shower.
I not sure why but , i get fevers with showers warm ones, get dizzy and feel sick😢 anyone else?
I’m not sure what might give you fevers. That’s a new one for me for people with MS. Did you experiment with the temperature of showers to figure out what doesn’t cause fevers anymore? I take mine at luke warm, almost cold.
Definitely watch that sugar in the diet for sure.
I’ve started to battle inflammation and it’s definitely helped.
Not sure if urination is more tied ro my blood pressure pills.
I’ve had to experiment with so many variables with MS. Especially any non-MS medications.
Definitely agree wirh you about walking.
I have gotten the cost down so now I try and always have it stocked up.
I just was diagnosed with this nasty disease. I super appreciate you sharing this because these doctors are ruthless about sharing ANY information! I had to BEG my dr for steroids AND Ampyra. Thank you, soooo much!
Wonderful to hear. Ampyra isn’t a walking issue cure but it definitely helps me.
Good luck those skills are in demand
Welp, I had a job for 2 years with a company where all employees are 100% remote. I was told that sales are slow so I will be furloughed in hopes they can raise sales and bring me back. I started finding a new job but it’s a struggle since I can’t travel for work due to MS and I need to be 100% Remote due to walking issues.
Ampyra is recommended once per day in Japan
The bottle says 1 every 12 hours. I take mine at 6am and 12:30pm. I feel like it weakens if I don’t.
I've tried Ampyra in the past and it helped a lot. Ive never tried Baclofen.
Ampyra is best. Baclofen didn't do much for me.
What other symptoms did you develop? I've had the same frequent urinary problems and also frequent diarrhea now and I'm thinking of pushing for an MRI
I wouldn't guess that frequent urination is definitely MS, but definitely get some tests. Not common for males under 40 but I'm not a doctor so go get checked. If MS, the earlier you catch it the better. I wish I didn't ignore it for maybe 10 years.
@@johnnyms8309 thanks for your reply. I had a sudden change in my bladder when I was 19 and I did just about every test. Saw a urologist and nobody could figure out why I was peeing so much. I'm 25 now and at my wits end and last year I had a sudden change in bowel habits that I've seen a gastroenterologist for and it's the same story. All my tests are showing good. Now I'm thinking it's a neurological problem
As you can imagine, I am very well-versed with doctors and procedures. Using logic, I would start with the major stuff to make sure everything is OK. I have seen a urologist many times and also a nephrologist. I definitely recommend you see someone for a colonoscopy to make sure it’s not colon cancer. Just cross off all of the major stuff so that you can focus on smaller things. That is how I usually hand handle it. Focus on what you can control and not the mental anxiety of wondering what it could be.
@@luisgarcia152 yes that's about where I'm at. I've seen a urologist for my bladder issues and he said it was just anxiety. I've also had a bladder ultrasound and have had a colonoscopy with biopsies and CT of my lower abdomen. Still my gastro hasnt given me a solid answer. No I'm moving on to neurology and maybe see an endocrinologist
Same here...its a full time job..
you are not alone, as well as many others, share the same things.
I still need to do barely warm water in showers. It definitely starts my day badly if I make the water too hot.
Thank you for sharing your experience. I really love how you called your fatigue, hiccups. Having RRMS myself, people don’t understand how symptoms can come unexpectedly and leave quickly, over a period of hours, days, weeks, or never at all. Every “hiccup” is different. I really appreciate you for speaking about this. 💗 🧠 💪🏼
Many people have symptoms that you can't see with your eyes. I walk with a good limp, so it's easy for them to see my issues. Hiccups, come and go. The MSers with extreme fatigue have no way of showing that to people.
I took baclofen for months. It absolutely did nothing. I just started AMPYRA this morning. I’ll be back with any results as I see them.
I agree with you completely. Ampyra is the only way to go regarding walking. Baclofen didn't do much at all.
Do you have spasticity? That’s what I take baclofen for
I took back often, because my right leg is very spastic when I walk. I would hope that it would help me, but it didn't when compared to Ampyra.
It’s been two years how are you now
I've had MS now for 11 years. The medication has helped it not progress quickly but I still have issues walking. I can walk but even walking to the mailbox. Takes a lot of effort. Especially when it's hot outside. Heat really makes my walking worse. I've even noticed that my right hand motor skills. Get really bad when the temperature rises. All in all, I'm doing pretty good except for my walking limitations.
czcams.com/video/EHVXJpDBcmU/video.html In this video, Alan Macdonald, FCAP, A pathologist from Florida, and a well respected researcher goes over some impressive findings regarding Spinal Fluids of patients with Multiple Sclerosis.
In this video, Alan Macdonald, FCAP, A pathologist from Florida, and a well respected researcher goes over some impressive findings regarding Spinal Fluids of patients with Multiple Sclerosis. czcams.com/video/EHVXJpDBcmU/video.html
In this video, Alan Macdonald, FCAP, A pathologist from Florida, and a well respected researcher goes over some impressive findings regarding Spinal Fluids of patients with Multiple Sclerosis. czcams.com/video/EHVXJpDBcmU/video.html
I have found that adaptive devices at home at times can make me insecure in other spaces where the setup doesn’t match up. Ultimately my brain gets a bit scrambled which become stressful in public. Any moments where everything feels completely new and unfamiliar ?
It’s always a mental burden to plan anything outside of the home. I swear we have to think of 30+ things in advance and some are just potential situations to prepare in case they happen. I sometimes don’t leave the house because the burden isn’t worth it.
I am so grateful to dr osazee on CZcams who cured me from hsv_2 with his effective herbal medicine may God bless you sir you are truly a man of your world
I’m going to have to check him out.
Doctor Salami on his CZcams me from herpes virus with his herbal medicine.reach out to him today
Thank you LG3 for sharing your experience and mindset through this.
My pleasure!
Yeah, I have MS and it's horrible 🤦♀️ I'm so tired of peeing.🤷♀️
I still have frequent urination but after 11 years since diagnosis, I’ve created new habits to frequently go to the bathroom, especially before I leave the house.
Hi Johnny, do you know de Coimbra Protocol (Cícero Coimbra, a neurologist, physician from Brazil)? He developed, several years ago, a protocol to all autoimune diseases, he is more well known by his incredible results in MS patients. He treats patients with high doses of Vitamin D, because he discovered that all the autoimune diseases are related to Vitamin D defficience (it's a hormone, not a vitamin). Well, one of the things he says that conditions the treatment are long and hot showers! And that's how I've found you. I don't know if you can understand portuguese or brazilian, but try to search for his work. Cícero Coimbra - Vitamina D. There's also another channel on youtube from a Doctor that uses Coimbra's protocol (it is more complex than just taking extremely high doses of vitamin D), but also taking the gluten and sugar off the diet. The results are absolutely astonishing. Go and see for yourself. This is the channel : czcams.com/channels/O3qwlcPggTWdeJ-QgVp2Iw.html There you'll find many videos with patients recovering from autoimune diseases, but if you want to be more specifi, search: Esclerose Múltipla, that's how we say MS (multiple sclerosis) in Portuguese. I really hope that this information can help you to have a better life. Pedro Mar
Thanks a ton for sharing information. I’m always looking for ways to help my MS.
@@luisgarcia152 , I don't know if I was clear on the information about the showers. He says that those who take long and hot showers have more difficulties in recovering. If you manage to contact them and start the treatment, then send me a feedback. Hope it works well on you! (pedromar.pt@gmail.com)
Thanks a lot for sharing. I haven't been officially diagnosed yet but I do have brain lesions and a ton of problems that makes me suspect MS. One of the problems is right after I take a shower I start shaking, visibly shaking. It's difficult for me to stand because my legs are shaking and weak and it's difficult for me to comb my hair because my hands are shaking. I also can't get into a sauna because of the same problem I feel like I'm going to pass out very quickly and then I'm so tired and shaky and it goes on for quite some time. Sometimes as long as a day. Thank you for sharing your experience so that I know that I'm not alone in all this. I'm really trying just to live a normal life but every day it seems like it's one more thing that I'm having trouble with. I just subscribed to your Channel.
I have been taking Baclofen for muscle spasms for years now. It wasn't until I started taking the Ampyra with it that my walking actually improved.
Ampyra is still the winner for me.
I am sorry for the loss of your friend.♡ I am grateful for the informative content that you are putting out. I appreciate your candid honesty. Thank you for producing these videos, so we can learn from your experiences. It is super comforting to know that there are others experiencing the same things. Without a diagnosis, and uncertainty about what these types of experiences are, one can feel quite crazy when these things happen, or when trying to explain it to others who aren't familiar with MS symptoms. Thanks again, and be well! ♡♡♡
Thanks for your comments. The goal of this channel is to share my experiences with other MSers.
I live in Kenosha Wisconsin by the way this is Gary again
Email me at johnnyms152@gmail.com and we can coordinate a time to chat.
Hi my name is Gary I have MS I would love to video chat with you let me know how you would want to do that thankyou
I would still be open to a video chat if you’d like to share our experiences and maybe give each other tips.
Get out there and enjoy yourself Johnny! Maybe stay near some water so you can cool off? Good luck dude, much love from a fellow MSer from across the pond.
I had my campath /lemtrada treatment 11 years ago, it was the best thing I did for my MS. Thank you for sharing your lemtrada story
I’ve been quite pleased so far. I hope it continues. Come back and visit at times. I’ll be posting a couple times a month about my MS experiences. I bet you also have a ton of similar situations.
Sorry to hear about the unfortunate event. Especially since you were working remotely already. Which State are you in?
Texas
@@johnnyms8309 Same here! I'm from Texas as well. Hopefully, the economy here recovers sooner rather than later.
I agree with you. My problems were walking and balance mainly in the earlydays. No pain, no eye problems. Still after 18 years after diagnosis, use wheelchair all the time, drive a wheelchairvan with hand controls, I guess it was so gradual that I just adjusted and kept going. It is important to do everything while you can, then you aren't trying to do things when you can't. I'm happy and just rolling through life. I'm 62 years old now.
I’m thankful my walking is manageable today. 11 years since diagnosed. I’m already mentally preparing to be completely in a wheelchair later in life but praying it somehow stays away.
I have the smart scoot also. Every time I use it I get asked where I got it.
I’m still occasionally using the Smart Scoot. It’s been reliable for me. I don’t use it daily but maybe a few times per month. I took checked it at the gate on a plane once and used it all weekend for a wedding in Hawaii. It made my experience so much better.
I am also a CZcamsr who has MS. I am just now starting a channel! Come follow me for some humor... it’s my greatest form of therapy!