Keep fighting my Brother! Each day is a gift. A friend of mine has been living for more than 10 years now. Its a a lot. Look we can get cancer each day, and live 6-12 month, you are going to live so much more than this. 💪🏾 Best wishes from Germany👍🏻
Hello James. Thankyou for this🙏 I was given 14 months to 2 years at diagnosis. I am 9 years in now. To be honest that prognosis held me back for a long time. Wasted too many years. Keep up the good work. And keep strong. Take care x
Thank you so much for doing this video. My brother-in-law passed away from ALS. He was diagnosed in 2019 and passed in 2021. Unfortunately, his disease progressed quickly. He was a double bass player with the Cincinnati Symphony (in the USA) He and my sister had been married 36 years and had five grown children and one grandchild. I moved in with them to help. As heartbreaking as it was…it was a magical experience. He was an amazing man, and I feel so grateful to have been there for him and my sister. ALS/MND is such a horrible disease. Throughout the journey… from his diagnosis to his passing, the love, support, friendship and Grace that was given, still blows me away. The symphony, my sister’s students, their community, church and family and friends raised a good amount of money for ALS research. But even more importantly, they raised the hope and spirits of my brother-in-law, my sister, their children, and our family. I’m sending love and light to you and your family…
Hello my young friend. Briefly, I developed weakness in my left arm and leg. After several rounds of testing, I was diagnosed with ALS. I went through all the emotions just as you described. After living with the grim reaper for several months, I pursued a second opinion. The second opinion was that I had a different MND; PLS. So my death sentence was commuted to a life sentence without parole. This was 18 years ago. I have adapted and still enjoy every day of my life. I recently went through another full work up ( MRIs, bloodwork and EMGs) and diagnosis. The neurologist told me that yes, I most likely had a form of PLS that had hardly advanced over all these years, but ultimately it is a MND of unknown origin. So life goes on. I’m now 70 years of age. Hopefully, the advancement of medical science will, during your lifetime, find a treatment for this area of disease. I wish you strength and patience.
Stay strong I know it's a whole new world but your not alone , nothing I will say will help but your very brave and I admire you for even being able to tell people, that tells me your strong minded.
Total respect..Life is a terminal disease ,none of us know what is around the corner.The only difference between yourself and the rest of us is you have been given a diagnosis.However the prof said minimum ten probably decades.Hold onto that thought.Many people watching this video who are fit and well wont be around in ten or twenty years,something unexpected will have happened to them,such is life, this is why we should not put off til tomorrow what we can do today. All the very best on your journey.
Hi James the great algorithm in the internet sent you my way 😂. I’m really pleased to have stumbled across your channel… might sound daft but you’ve kind of “normalised” MND for me… I’m at the beginning of my journey, just 11 weeks in from my first symptom. I’m 58 and I live over in Lincoln. I won’t bore you with my details but your journey sounds somewhat similar to mine. I’m not yet diagnosed… I’ve had all the tests to eliminate anything else but I’m yet to have the EMG or indeed sit in front of a neurologist… can you believe that there’s a one year wait to see one ! I have a family history of MND ( dad died of it, sister is further along than me but still not diagnosed) My Gp says he thinks it’s MND… marvellous!! So now I wait, my mind is my enemy… i catastrophise constantly. What worries me is just how quickly my symptoms are progressing…. I have a son at university that I seriously do not want to dump my health issues and care on to… that’s my biggest fear. Anyway I said I wouldn’t bore you with my details and I see that I just did exactly that 😝. Wishing you and your family many years of happiness to come.
A close relative of mine got this. It started in her right arm. As mucle waistage pluss the mucle twitching. She thought it to be carprel tunnel. But no. Mnd. And was given 6 years. Was told she would lose her voice ect. She made the 6 years. And stopped treatment to die in her sleep in a hospital. End of life care. They made her passing easier for her. She went in her sleep. As in final stage it affected her breathing. I think you are strong person inside. Enjoy every day. Find something to be grateful for remember your happy moments each day. It helps you face the next. And try to do the things nice you really like to do. They said they gave her meds to slow the condition. She hoped they would find more help. She fought long. Live your now to make lovely memories. And enjoy those lovely children. Mine are my saviors. My happiness they are my love. Always see your blessings and be thankful for them and be around friends. This helped her pluss her love for god. The all of the above helped me with my cancer journey. As spock would say from old startreck live long n prosper :)
You sound like a wonderful person, and I am truly sorry you are going through this. I want to tell you that I know of a person with ALS and he lived a long time. God bless and continue your life
My heart goes out toyou. I have chronic life limiting heart disease and I totally hear you. Yes, absolutely live the best life you can and be there for your kids but also be there for yourself. Take care.
You are a very brave man , yes inside your broken but your mentally strong!!! People like you can make having this disease ever so slightly comforting and you are not giving up . I dont know you but i can say your family will be massively proud of you!! Keep fighting soldier.
I'm Going Down Your Same Road... Mine Is Slow Progression... Started With Bulbar In My Throat and I'm Twitching A Bit. 1500MG of Magnesium Threonate Daily Helps w/The Twitching. Good Luck Brother
God bless you and your family, I hope you’re all finding your way through this. I have had muscle fasciculations in all my limbs since April 2017…my EMG’s (4 total) have always come back to show no evidence of MND. I am blessed, but certainly understand the stress of not knowing. I will pray for you and that your progression stays at a snail’s pace.
Great video James , it takes a lot to talk about living with MND ,but your diary will help raise awareness even more 👍 our daughter was diagnosed aged 29 prior to diagnosis did running, marathons and gym , she fought it for 7 years , she had done a lot to raise awareness via MNDA in the 2017 #myeyessay campaign and lots of fundraising for SitraN at Sheffield too, Time as you indicate in the video is not what anyone with a terminal illness does not have ,the worst thing is as you say waiting for diagnosis and follow up appointments ….now trying to help others on forums with feeding back what worked and what didn’t for our journey as a family , we admire what you are doing 👍
Bless you, thanks for sharing your story. This will bring a lot of help and understanding to a lot of people. My husband nursed his late wife with this . Sending love to you and your family.❤x
I lost dear friend to ALS few months ago. I am still grieving, as it was the heaviest loss I've experienced in my entire life. I miss him so deeply, I wanna scream, I will never have close friend like him, nor do I even want to. The good news is I truly believe cure/treatment are just around the corner, there is so much going on in ALS research, there are discoveries made almost on weekly bases. Sadly, it didn't come soon enough for my friend, but you definitely have a good chance. It will come, it must! the doctors and researchers say it's just around the corner. As an oppose to 15, 20 years ago, when there was nothing on pipe lines, and it was hopeless. Keep the good fight, and I wish you all the best! Also, from what I see, your mnd is not as aggressive as some people 's, they get a year, and it's over. Your ALS is progressing slowly, another reason to be hopeful!
Thank you for sharing your story, James. Hoping and praying some better treatment is found soon. Until then, bless you and your family and grab any joy you can!
God bless you, Sweetheart. ALS has seen an explosion in diagnosed cases in recent years along with many cancers, blood disorders, heart disease and more in people in the prime of life with no underlying chronic health history. This is something never before seen in our medical system prior to the pandemic. Diseases are typically being diagnosed at late stage and are aggressive in nature with many not responding to typical treatment protocols. This is not an organic occurrence in my humble opinion, and it is incredibly important that the public be made aware it is happening to help put pressure on relevant authorities and force them to research this and determine the cause. We are losing our future to diseases that prior to 2020, we saw majoratively in an elderly population with most patients having comorbid conditions and slow progression of disease. Something caused this massive surge in sickness and we must identify what it is and fast!! I will be praying for you and your sweet family. ❤
Hey. Thanks for your video, hope you doing well! Im investegating ALS for me now aswell, im 23 years old.. Same as you started with sudden heavy sensation in my arms, then came the twitching. Now 4 months later its almost in my whole body. My question is do you experience a lot of pain? Im in a lot of discomfort and pain in all my muscles, joints and tendons, some nerve pain aswell, did you have this during your progression? Best of luck to you, cheers /Erik
I don’t want to minimize what you’re going through, but it would be so unbelievably rare for a 23 year old to have ALS. It’s rare to begin with and a massive majority of cases are age 60+. There are lots of nerve issues that can cause fasciculations…ALS seems to be a disease of failure, not pain.
I like your personality and your attitude. I’m just recovering from an illness that I thought was ALS. Thank you for your videos. This experience has made me feel extremely grateful for any day that I feel healthy. It has also made me want to help others that are struggling with serious health issues. Best wishes
So so glad I stumbled on your posts ! What a pleasure to read your journey. Try to brief my back story,am 59 years old,at 50 years old life took horrible turn out of the blue . Always I suppose that Doctors ideal patient,don’t drink smoke always eaten clean ,gym ,cycling,walking dogs ,full time night job ,played Rugby and was before Diagnosis. Excruciating bad back put down to Rugby or work ,horrible stomach sickness,put down to must have not cooked chicken thoroughly. Week went by ,got out bed collapsed legs arms hands numb . Fast forward went hospital,blue light another hospital,couldn’t wee but wanted to (bizzare) ,Catheter yikes 😟 glad I not feel that. MRI SCAN ASAP CT SCAN! Then couldn’t not move anything from neck down,extremely painful worrisome. Then Lumbar Puncture 😢 Days later that really clever Professor Type With bow tie on appearing at bedside plus six others and students. Unfortunately you have GUILIAN BARRE SYNDROME 😮Urh 1-100,000 GBS for short . Also now have MMNCB 0.6-100,00 people. IVIG is the treatment but after 7-8 Infusions does not benefit me . My Symptoms are of which seems too run nearly parallel with MND/ALS So my Nerves in parts are not playing ball with my Brain 🧠 so signals sent can’t bypass the Axons because of damage,hence muscle Atrophy hands legs arms ,toes don’t move ,balance issues,cannot open jars pills ,laces zips ,fingers weak,essential tremors in hands. Fasciculations badly quads biceps triceps. So inevitably ongoing body weakness, I say knowledge is power but google can be rabbit hole ,I have asked questions, Neurologist “ is it possible limb onset 😢 Sorry it’s long Best wishes.
Thank you for sharing your story. It's important for others to know they are not alone, and I hope it helps you to make these videos. Wishing peace and love for you and your family!
Hi James my friend has been diagnosed with with this unfortunately,, have you researched MND reversal here on UA-cam ,,, Mark Manchester is an amazing man who was ventilated and tube fed and he is now walking and eating and the treach has been removed ,,, hope you can find something useful from this 🙏 blessing xx
This really struck a note with me, the parallels with my own experience are significant. With one thankful exception. I was a long distance runner. At the end of one run, out of nowhere, I had weakness in the right leg that progressed, and within months twitching muscles everywhere. I had all the tests, experienced all the waiting, and although I still don’t know what I have it isn’t MND. I can only imagine how you felt at diagnosis by saying that I burst into tears when I was told I didn’t have it. I’m now just waiting to see if I stay as I am, get better, or deteriorate. Sharing this, you’re an inspiration! Stay strong my friend.
Sorry to hear you're dealing with this. I'm also dealing with arm twitches. Did you ever have days where the twitching stopped or was it nonstop once it started? Hope you are doing well my friend.
@@DiagnosedDad I'm sorry to hear that! It seems like yours is very slow moving and that is great. You're an inspiration. If you don't mind me asking, was it like 27/7? As in, every minute, second, etc.?
Ok, thank you for your reply. I'm not sure if you'd describe it as stiffness also, but I've had forearm tightness (in both arms) for months, as well as pain in my hands, especially the palm. Sometimes I have pain in my wrists as well as both shoulders. Maybe it's fibromyalgia?? I went to multiple neurologists, including a neuromuscular specialist who performed an EMG. The first one showed abnormalities, but the most recent one (in January of this year) was clear. I hope you are doing ok! 🙏
Sorry for my bad English. I have a question. Did you have permanent twitches without breaks at the beginning of your symptoms? Or did it stop for a few minutes?
My dear brother James was diagnosed with MND at 77yrs old, he died around 10 months later …He was a very committed Christian, and I believed God took him early so he didn’t have to suffer for years from this horrible disease …
Listen to this talk by him. It’s quite theoretical, but a very novel way to look at these conditions. For ALS, he has not done a study yet but is hoping to do soon. He is publishing a promising case study in ALS which he refers to at 25:40 mark. ua-cam.com/video/mCnyZ-eoups/v-deo.htmlsi=ufhTUIniq-KTRCl3 It’s worth trying to contact him to ask what specifically he recommends you to try. Fasting/keto is definitely going to be part of it. I love his talk about glioblastoma where he presents two patients from his study who should be dead but are doing very well. Many serious researchers and functional medicine doctors talk about mitochondria being behind all illness. I live in Canada and am proud of this great, intelligent doctor from Canada.
I guess the other neurologist didn't want to give the final word hoping they were wrong. It can't be easy to tell that to someone, especially young father of three.
I’ve muscle twitching all over my body. Went to see a neurologist and he said it’s nothing to worry about. You went and yours said it’s worrying? Strange
I think in combination of the results from my blood test and the slow but progressive weakness with the twitches was their concern for me. If you don’t have weakness or signs of muscle wasting from blood test or visually then your neurologist is probably right. Could be benign Fasciculation syndrome maybe?
@@DiagnosedDad And Stephen Hawking lived with it for 55 years, so there is hope for you to live very long. When the doctors told Hawking he will live 2 years, he lived over 5 decades, so when the doctors tell you you will live ten years, I know you will live more than 80 years!!!! LEGEND!!!!!
Thank you for sharing your story. Dr Brooke Goldner has a YT channel, on which she shares how she reversed her advanced autoimmune disease with diet (raw vegan hyper nourishment) and now, decades later, she remains disease-free. Definitely worth a look. Very best wishes 👍
Thank you so much for your testimony. You are a great man. I feel fasciculations in both legs, neurologists talk about benign fasciculations, but I'm scared. I truly wish you and your beautiful family the best
3 days ago, I had pulsations throughout my body, moving from place to place for seconds to the point that I cannot sleep. I am going to the neurologist tomorrow. I hope it is not ASL or MMS. I am 24 years old and still in the early stages of my life. I pray to God that it is not something serious
@@DiagnosedDad Pulsations throughout the body is most likely caused by toxin overload in the gut which restricts the utilisation of potassium or magnesium in the body which leads to twitching everywhere if there’s no weakness aswell. ALS usually occurs with twitching first but then complete weakness in that area of the body.
Jesus heals I know that. But I am also interested to further understand what dietary changes you made. Food and drinks. and by comparison what was your lifestyle like before the diagnosis if you can share
@@annipsy2185 they have similarities. MS is a chronic autoimmune disease whereas MND is a group of diseases that cause motor neurones to become damaged and die
To this day they know a lot but they didn't solve the entire puzzle yet. The process involved in voluntary movement is extremely complex. Hope it's just a matter of time. 🙏
There’s multi factor but what people have found out so far is that the causes could be: 1) Borelia bacteria (Lyme disease) 2) Heavy metals (for example mercure in amalgam in your teeth) some people diagnosed with ALS reported drastic improvements after their removals. 3) Poor diet. Not directly a cause but indirectly could prevent the immune system from fighting a bacteria attacking the nerves. Some people with ALS managed to slow down the progression of the disease by completely reviewing their lifestyle. 4) Lack of B12 vitamin 5) Vaccines (they can cause neurological damages because they contain aluminum) … The list is long but overall among the people who have managed to slow down the disease or even reverse it, they had to completely change their diet, remove processed poisoned food, eat raw organic living food , and remove anything toxic they would put on their body. It seems varsity athletes are more susceptible to get it if there’s a terrain.
@@steven7846 reversal really are we sure your not trolling right I don't believe a deadly disease like ALS can be reversed but slowed down by taking the right stuff can a disease like ALS be prevented by taking those things u just named maybe
I know that my husband has it. I’ve known for about 18-months based on his symptoms his epiglottis is getting weaker he is constantly clearing his throat. He gets excruciatingly painful inner leg cramps - this is sporadic and his hands will cramp up uncontrollably. He’s a mechanic by trade and we work together. I’m terrified but I never say or discuss my thoughts with him. And he’s not the type to do any research so we play the waiting game. I will advise him not to see a neurologist or go for tests I mean what’s the point. There is no cure.
@@DiagnosedDad hello Did you get the vax and could you recall any symptoms afterwards that would worsen ? If you haven’t looked yet, please check the deana protocol. Deana is a woman still alive today thanks to her father who researched the causes of ALS for many years. He concluded that ALS was caused by a bacteria (borelia). You should try his protocol and also eat food that have anti fungus properties (garlic, curcuma). You need to eat those raw! Cooking kills their benefits
Turn to Jesus He loves you, He is the healer of the body And savior of the soul, There is True Hope in Jesus, God protects Psalms 91, He is the God of miracles Acts 2:21 And everyone who calls on the name of the Lord will be saved Jesus alone saves Trust Him with your salvation John 3:16 1 Corinthians 15 1-4 Moreover Brethren, i declare unto you the gospel which i preached unto you, which also ye have received, and with wherein ye stand By which also ye are saved, if you keep in memory what i preached unto you, unless ye have believed in vain, For i delivered unto you first of all that which i also received, how that Christ died for our sins according to the scriptures And that He was buried, and that He rose again the third day according to the scriptures, Take care
Been there done the journey. My advice, Find Jesus in your life, let him in to your heart. He helped us both so much, there is no person who can comfort you like him. Bless you all.
@@imho2278What she means is her husband was diagnosed with mnd, as was I, I am 2 and half years in with months left. As a 37yr old man leaving this planet soon, find Jesus, stop being a rude clown
Keep fighting my Brother! Each day is a gift. A friend of mine has been living for more than 10 years now. Its a a lot. Look we can get cancer each day, and live 6-12 month, you are going to live so much more than this. 💪🏾
Best wishes from Germany👍🏻
Hello James. Thankyou for this🙏
I was given 14 months to 2 years at diagnosis. I am 9 years in now. To be honest that prognosis held me back for a long time. Wasted too many years.
Keep up the good work. And keep strong.
Take care x
Hi Julie thank you for your comment. I’m glad to hear this. I try not to dwell on time left now and live for the moment. X
@@DiagnosedDad 💯🎯
Are you have MND
@juliedawn4271 9 years Julie , fantastic..Promising trials are going on....hang on..
@@DiagnosedDad That's the best mindset to have 💯💪
Hello mate, just saw the video, fantastic!! You do a great job as a soundboard for all of us suffers. Can’t wait for the next one. Keep it up mate
Thank you mate appreciate the watch and I’m looking forward to making more videos.
Thank you so much for doing this video. My brother-in-law passed away from ALS. He was diagnosed in 2019 and passed in 2021. Unfortunately, his disease progressed quickly. He was a double bass player with the Cincinnati Symphony (in the USA) He and my sister had been married 36 years and had five grown children and one grandchild. I moved in with them to help. As heartbreaking as it was…it was a magical experience. He was an amazing man, and I feel so grateful to have been there for him and my sister. ALS/MND is such a horrible disease. Throughout the journey… from his diagnosis to his passing, the love, support, friendship and Grace that was given, still blows me away. The symphony, my sister’s students, their community, church and family and friends raised a good amount of money for ALS research. But even more importantly, they raised the hope and spirits of my brother-in-law, my sister, their children, and our family. I’m sending love and light to you and your family…
Hello my young friend. Briefly, I developed weakness in my left arm and leg. After several rounds of testing, I was diagnosed with ALS. I went through all the emotions just as you described. After living with the grim reaper for several months, I pursued a second opinion. The second opinion was that I had a different MND; PLS. So my death sentence was commuted to a life sentence without parole. This was 18 years ago. I have adapted and still enjoy every day of my life. I recently went through another full work up ( MRIs, bloodwork and EMGs) and diagnosis. The neurologist told me that yes, I most likely had a form of PLS that had hardly advanced over all these years, but ultimately it is a MND of unknown origin. So life goes on. I’m now 70 years of age. Hopefully, the advancement of medical science will, during your lifetime, find a treatment for this area of disease. I wish you strength and patience.
This story is exactly what I got. Just been diagnosed few days ago.
Stay strong I know it's a whole new world but your not alone , nothing I will say will help but your very brave and I admire you for even being able to tell people, that tells me your strong minded.
@@ColossalCrib New medication on the horizon....hang on
@@RobdeKlerk-qg6lcI'm on a trial atm. Don't know whether it's the placebo or the drug. Results won't come in until next year.
Total respect..Life is a terminal disease ,none of us know what is around the corner.The only difference between yourself and the rest of us is you have been given a diagnosis.However the prof said minimum ten probably decades.Hold onto that thought.Many people watching this video who are fit and well wont be around in ten or twenty years,something unexpected will have happened to them,such is life, this is why we should not put off til tomorrow what we can do today.
All the very best on your journey.
Thank you so much for your lovely comment very much appreciated 🙏🏻
In 10 years time, perhaps the appropriate medicine will be available. Hang in there. God bless you. :)
@@thalbott21 fingers crossed 🤞🏻
Hi James the great algorithm in the internet sent you my way 😂.
I’m really pleased to have stumbled across your channel… might sound daft but you’ve kind of “normalised” MND for me…
I’m at the beginning of my journey, just 11 weeks in from my first symptom.
I’m 58 and I live over in Lincoln. I won’t bore you with my details but your journey sounds somewhat similar to mine.
I’m not yet diagnosed… I’ve had all the tests to eliminate anything else but I’m yet to have the EMG or indeed sit in front of a neurologist… can you believe that there’s a one year wait to see one !
I have a family history of MND ( dad died of it, sister is further along than me but still not diagnosed)
My Gp says he thinks it’s MND… marvellous!!
So now I wait, my mind is my enemy… i catastrophise constantly.
What worries me is just how quickly my symptoms are progressing…. I have a son at university that I seriously do not want to dump my health issues and care on to… that’s my biggest fear.
Anyway I said I wouldn’t bore you with my details and I see that I just did exactly that 😝.
Wishing you and your family many years of happiness to come.
A close relative of mine got this. It started in her right arm. As mucle waistage pluss the mucle twitching. She thought it to be carprel tunnel. But no. Mnd. And was given 6 years. Was told she would lose her voice ect. She made the 6 years. And stopped treatment to die in her sleep in a hospital. End of life care. They made her passing easier for her. She went in her sleep. As in final stage it affected her breathing. I think you are strong person inside. Enjoy every day. Find something to be grateful for remember your happy moments each day. It helps you face the next. And try to do the things nice you really like to do. They said they gave her meds to slow the condition. She hoped they would find more help. She fought long. Live your now to make lovely memories. And enjoy those lovely children. Mine are my saviors. My happiness they are my love. Always see your blessings and be thankful for them and be around friends. This helped her pluss her love for god. The all of the above helped me with my cancer journey. As spock would say from old startreck live long n prosper :)
You sound like a wonderful person, and I am truly sorry you are going through this. I want to tell you that I know of a person with ALS and he lived a long time. God bless and continue your life
YOUR AWSOME KEEP UP THE GOOD WORK!!
My heart goes out toyou. I have chronic life limiting heart disease and I totally hear you. Yes, absolutely live the best life you can and be there for your kids but also be there for yourself. Take care.
You are a very brave man , yes inside your broken but your mentally strong!!! People like you can make having this disease ever so slightly comforting and you are not giving up . I dont know you but i can say your family will be massively proud of you!! Keep fighting soldier.
I'm Going Down Your Same Road... Mine Is Slow Progression... Started With Bulbar In My Throat and I'm Twitching A Bit. 1500MG of Magnesium Threonate Daily Helps w/The Twitching. Good Luck Brother
Prayers for you, James.
God bless you and your family, I hope you’re all finding your way through this.
I have had muscle fasciculations in all my limbs since April 2017…my EMG’s (4 total) have always come back to show no evidence of MND.
I am blessed, but certainly understand the stress of not knowing.
I will pray for you and that your progression stays at a snail’s pace.
Great video James and so helpful.
Thank you. More to come 💪🏻
Great video James , it takes a lot to talk about living with MND ,but your diary will help raise awareness even more 👍
our daughter was diagnosed aged 29 prior to diagnosis did running, marathons and gym , she fought it for 7 years , she had done a lot to raise awareness via MNDA in the 2017 #myeyessay campaign and lots of fundraising for SitraN at Sheffield too,
Time as you indicate in the video is not what anyone with a terminal illness does not have ,the worst thing is as you say waiting for diagnosis and follow up appointments ….now trying to help others on forums with feeding back what worked and what didn’t for our journey as a family , we admire what you are doing 👍
So so sorry. Just lost a young friend from this beast. He lived about a decade from diagnosis. Hang in there 🫶🏻🙏🙏🙏🙏
Thank you 🙏🏻
Bless you, thanks for sharing your story. This will bring a lot of help and understanding to a lot of people. My husband nursed his late wife with this . Sending love to you and your family.❤x
Thank you so much. More videos to come very shortly after a bit of a social media break x
I lost dear friend to ALS few months ago. I am still grieving, as it was the heaviest loss I've experienced in my entire life. I miss him so deeply, I wanna scream, I will never have close friend like him, nor do I even want to.
The good news is I truly believe cure/treatment are just around the corner, there is so much going on in ALS research, there are discoveries made almost on weekly bases. Sadly, it didn't come soon enough for my friend, but you definitely have a good chance. It will come, it must! the doctors and researchers say it's just around the corner. As an oppose to 15, 20 years ago, when there was nothing on pipe lines, and it was hopeless.
Keep the good fight, and I wish you all the best!
Also, from what I see, your mnd is not as aggressive as some people 's, they get a year, and it's over. Your ALS is progressing slowly, another reason to be hopeful!
Thank you for sharing your story, James. Hoping and praying some better treatment is found soon. Until then, bless you and your family and grab any joy you can!
@@sarahtalbot4363 thank you so much x
God bless you, Sweetheart. ALS has seen an explosion in diagnosed cases in recent years along with many cancers, blood disorders, heart disease and more in people in the prime of life with no underlying chronic health history. This is something never before seen in our medical system prior to the pandemic. Diseases are typically being diagnosed at late stage and are aggressive in nature with many not responding to typical treatment protocols. This is not an organic occurrence in my humble opinion, and it is incredibly important that the public be made aware it is happening to help put pressure on relevant authorities and force them to research this and determine the cause. We are losing our future to diseases that prior to 2020, we saw majoratively in an elderly population with most patients having comorbid conditions and slow progression of disease. Something caused this massive surge in sickness and we must identify what it is and fast!! I will be praying for you and your sweet family. ❤
@@deniseellenburg649 pic pic is the cause
@@deniseellenburg649 pic pic is the cause
Hey. Thanks for your video, hope you doing well!
Im investegating ALS for me now aswell, im 23 years old.. Same as you started with sudden heavy sensation in my arms, then came the twitching. Now 4 months later its almost in my whole body.
My question is do you experience a lot of pain? Im in a lot of discomfort and pain in all my muscles, joints and tendons, some nerve pain aswell, did you have this during your progression?
Best of luck to you, cheers /Erik
Curious did you find anything out, as I would say I have pain. My psyiatrist (not psychiatrist) said that it's usually non sensory....
I don’t want to minimize what you’re going through, but it would be so unbelievably rare for a 23 year old to have ALS.
It’s rare to begin with and a massive majority of cases are age 60+.
There are lots of nerve issues that can cause fasciculations…ALS seems to be a disease of failure, not pain.
ALS could be caused by a Lyme disease (borelia). Please try an anti fungus to get rid of it and eat a very alcaline diet
Hi how are you now. And are you done any tests for check up
Damn the thing!!!! Live longer than predicted!!!!! Such a nice guy.
Thank you 🙏🏻
I like your personality and your attitude. I’m just recovering from an illness that I thought was ALS. Thank you for your videos. This experience has made me feel extremely grateful for any day that I feel healthy. It has also made me want to help others that are struggling with serious health issues. Best wishes
Thank you and I’m so glad yours wasn’t ALS
@@theoptimist9605 What was it ...if I may ask ?
You sound like a great guy and a wonderful dad I’m so sorry this is happening to you praying for as much good quality life for you as possible 🙏🏻
Thank you much appreciated
Great video, you are very brave to share this. I wish you the very best for continued slow, slow, slow progression. ❤
So so glad I stumbled on your posts ! What a pleasure to read your journey.
Try to brief my back story,am 59 years old,at 50 years old life took horrible turn out of the blue .
Always I suppose that Doctors ideal patient,don’t drink smoke always eaten clean ,gym ,cycling,walking dogs ,full time night job ,played Rugby and was before Diagnosis.
Excruciating bad back put down to Rugby or work ,horrible stomach sickness,put down to must have not cooked chicken thoroughly.
Week went by ,got out bed collapsed legs arms hands numb .
Fast forward went hospital,blue light another hospital,couldn’t wee but wanted to (bizzare) ,Catheter yikes 😟 glad I not feel that.
MRI SCAN ASAP CT SCAN! Then couldn’t not move anything from neck down,extremely painful worrisome.
Then Lumbar Puncture 😢 Days later that really clever Professor Type With bow tie on appearing at bedside plus six others and students.
Unfortunately you have GUILIAN BARRE SYNDROME 😮Urh 1-100,000 GBS for short .
Also now have MMNCB 0.6-100,00 people.
IVIG is the treatment but after 7-8 Infusions does not benefit me .
My Symptoms are of which seems too run nearly parallel with MND/ALS
So my Nerves in parts are not playing ball with my Brain 🧠 so signals sent can’t bypass the Axons because of damage,hence muscle Atrophy hands legs arms ,toes don’t move ,balance issues,cannot open jars pills ,laces zips ,fingers weak,essential tremors in hands.
Fasciculations badly quads biceps triceps.
So inevitably ongoing body weakness, I say knowledge is power but google can be rabbit hole ,I have asked questions, Neurologist “ is it possible limb onset 😢
Sorry it’s long
Best wishes.
Thank you for sharing your story. It's important for others to know they are not alone, and I hope it helps you to make these videos. Wishing peace and love for you and your family!
Thank you much appreciated 🙏🏻
Hi James my friend has been diagnosed with with this unfortunately,, have you researched MND reversal here on UA-cam ,,, Mark Manchester is an amazing man who was ventilated and tube fed and he is now walking and eating and the treach has been removed ,,, hope you can find something useful from this 🙏 blessing xx
Did you have pain, tingling numbness, electric shocks on your arms before weekness ?
No none
This really struck a note with me, the parallels with my own experience are significant. With one thankful exception. I was a long distance runner. At the end of one run, out of nowhere, I had weakness in the right leg that progressed, and within months twitching muscles everywhere. I had all the tests, experienced all the waiting, and although I still don’t know what I have it isn’t MND. I can only imagine how you felt at diagnosis by saying that I burst into tears when I was told I didn’t have it. I’m now just waiting to see if I stay as I am, get better, or deteriorate.
Sharing this, you’re an inspiration! Stay strong my friend.
Cheers Craig I hope your symptoms are not mnd
Hi Craig would you be able to share what the process was like to deduce what you have wasn’t MND?
Sorry to hear you're dealing with this. I'm also dealing with arm twitches. Did you ever have days where the twitching stopped or was it nonstop once it started?
Hope you are doing well my friend.
@@fabloon2623 my twitching was constant until the muscle in that area became so weak the twitching almost stopped.
@@DiagnosedDad I'm sorry to hear that! It seems like yours is very slow moving and that is great. You're an inspiration.
If you don't mind me asking, was it like 27/7? As in, every minute, second, etc.?
I was told 10 years but it got a wriggle on, I suspect 2. Going for VAD.
Hope you’re doing ok
Update...on SPG302 which regrows neurons. Tentatively improving....
How’s it going wish SPG, if it’s okay to ask? Heard some very promising news. wishing you the best 🙏🏼
@@imho2278 Which terms are we talking about ???
I'm sorry to hear about your diagnosis...Did you have any hand or knee pain? Or forearm tightness/spasms?
That’s ok. No pain experienced in knee but I have over time got arm stiffness and pain in shoulders due to weakening muscles.
Ok, thank you for your reply. I'm not sure if you'd describe it as stiffness also, but I've had forearm tightness (in both arms) for months, as well as pain in my hands, especially the palm. Sometimes I have pain in my wrists as well as both shoulders. Maybe it's fibromyalgia??
I went to multiple neurologists, including a neuromuscular specialist who performed an EMG. The first one showed abnormalities, but the most recent one (in January of this year) was clear.
I hope you are doing ok! 🙏
My sister got this it was horrible she passed in 2013. I love and miss you sis ❤❤❤😢
Thank you.
There is one UA-camr from Chile who said he stopped progression by eliminating all carbs and going Paleo diet.
🤨
Sorry for my bad English.
I have a question. Did you have permanent twitches without breaks at the beginning of your symptoms? Or did it stop for a few minutes?
They were pretty constant
@@DiagnosedDad And how long did it take for you to notice a weakness?
@@338jde I think I mentioned this in the video but about a year after my twitching there abouts
@diagnoseddad There are promising trials going on my friend....
My dear brother James was diagnosed with MND at 77yrs old, he died around 10 months later …He was a very committed Christian, and I believed God took him early so he didn’t have to suffer for years from this horrible disease …
Have you contacted Dr. Matthew Phillips? He is planning a research project with ALS in New Zeland. Apparently he is very responsive.
No I haven’t never heard of him over the pond in the uk.
Listen to this talk by him. It’s quite theoretical, but a very novel way to look at these conditions.
For ALS, he has not done a study yet but is hoping to do soon. He is publishing a promising case study in ALS which he refers to at 25:40 mark.
ua-cam.com/video/mCnyZ-eoups/v-deo.htmlsi=ufhTUIniq-KTRCl3
It’s worth trying to contact him to ask what specifically he recommends you to try. Fasting/keto is definitely going to be part of it.
I love his talk about glioblastoma where he presents two patients from his study who should be dead but are doing very well. Many serious researchers and functional medicine doctors talk about mitochondria being behind all illness. I live in Canada and am proud of this great, intelligent doctor from Canada.
I guess the other neurologist didn't want to give the final word hoping they were wrong. It can't be easy to tell that to someone, especially young father of three.
Are they sure it isn't PLS instead of ALS? It is remarkable that your voice is so well intact after years.
That would be best case scenario but unfortunately I was diagnosed with ALS but a slow version
New medication coming up my friend ? @diagnoseddad
@@RobdeKlerk-qg6lc I hope so 🤞🏻
@@DiagnosedDad Same here ...hang on my friend.....do you have dizziness as well ?
I’ve muscle twitching all over my body. Went to see a neurologist and he said it’s nothing to worry about. You went and yours said it’s worrying? Strange
I think in combination of the results from my blood test and the slow but progressive weakness with the twitches was their concern for me. If you don’t have weakness or signs of muscle wasting from blood test or visually then your neurologist is probably right. Could be benign Fasciculation syndrome maybe?
@@DiagnosedDad do you know what protein they looked for in your blood
@@brentpope100 just protein. Didn’t know there was more than one type of protein 🤷🏻♂️
If it’s all over your body that’s your body not absorbing potassium or magnesium. Have you ever had gut issues?
@@nikeshhindocha2100 it’s not all over but symptoms are spreading. Not had any gut issues as far as I’m aware
Have you heard about Joost Van Der Westhuizen?
Yes I have. South African Rugby player that unfortunately had MND 😢
@@DiagnosedDad And Stephen Hawking lived with it for 55 years, so there is hope for you to live very long. When the doctors told Hawking he will live 2 years, he lived over 5 decades, so when the doctors tell you you will live ten years, I know you will live more than 80 years!!!! LEGEND!!!!!
@@DiagnosedDadso potentially you could have 20 years ?
@@seanthundercock6770 who knows but fingers crossed 🤞🏻
@@DiagnosedDad is there no drugs to slow is further ?
Once again, the first symptom was twitching, even though we are told time and time again that muscle weakness will be noticed first.
God's Blessings 💫 ❤
Thank you for sharing your story. Dr Brooke Goldner has a YT channel, on which she shares how she reversed her advanced autoimmune disease with diet (raw vegan hyper nourishment) and now, decades later, she remains disease-free. Definitely worth a look. Very best wishes 👍
This is not autoimmune.
@@imho2278 Many scientists believe that autoimmune responses may be involved in MND.
Was your first EMG completely normal?
@@yasminebollea-h7k it didn’t show up an issues which is why I mentioned I had to have a 2nd EMG
Thanks so much for the reply. sorry for the questions, but I'm very worried about myself. During the first EMG you had no right weakness?
@@yasminebollea-h7k that’s ok. Yes correct no weakness in right
Thank you so much for your testimony. You are a great man. I feel fasciculations in both legs, neurologists talk about benign fasciculations, but I'm scared. I truly wish you and your beautiful family the best
@@yasminebollea-h7k most likely that if no weakness aswell
Most people who get this are athletic i mean literally there must be a connection to rigourous exercise
We wear our nerves out.
3 days ago, I had pulsations throughout my body, moving from place to place for seconds to the point that I cannot sleep. I am going to the neurologist tomorrow. I hope it is not ASL or MMS. I am 24 years old and still in the early stages of my life. I pray to God that it is not something serious
Keep us posted I hope it’s nothing 🙏🏻
That ain’t als
@@nikeshhindocha2100 I’m all ears if you know what it could be.
@@DiagnosedDad
Pulsations throughout the body is most likely caused by toxin overload in the gut which restricts the utilisation of potassium or magnesium in the body which leads to twitching everywhere if there’s no weakness aswell. ALS usually occurs with twitching first but then complete weakness in that area of the body.
@@nikeshhindocha2100 I have weakness aswell
Jesus heals I know that. But I am also interested to further understand what dietary changes you made. Food and drinks. and by comparison what was your lifestyle like before the diagnosis if you can share
huh. i thought its the same thing as MS basically 😅 still kinda confused
@@annipsy2185 they have similarities.
MS is a chronic autoimmune disease whereas MND is a group of diseases that cause motor neurones to become damaged and die
Are the doctors still not really sure what the cause of this disease is?
To this day they know a lot but they didn't solve the entire puzzle yet. The process involved in voluntary movement is extremely complex. Hope it's just a matter of time. 🙏
There’s multi factor but what people have found out so far is that the causes could be:
1) Borelia bacteria (Lyme disease)
2) Heavy metals (for example mercure in amalgam in your teeth) some people diagnosed with ALS reported drastic improvements after their removals.
3) Poor diet. Not directly a cause but indirectly could prevent the immune system from fighting a bacteria attacking the nerves.
Some people with ALS managed to slow down the progression of the disease by completely reviewing their lifestyle.
4) Lack of B12 vitamin
5) Vaccines (they can cause neurological damages because they contain aluminum)
…
The list is long but overall among the people who have managed to slow down the disease or even reverse it, they had to completely change their diet, remove processed poisoned food, eat raw organic living food , and remove anything toxic they would put on their body.
It seems varsity athletes are more susceptible to get it if there’s a terrain.
@@steven7846 reversal really are we sure your not trolling right I don't believe a deadly disease like ALS can be reversed but slowed down by taking the right stuff can a disease like ALS be prevented by taking those things u just named maybe
Look for mitochondria
I know that my husband has it. I’ve known for about 18-months based on his symptoms his epiglottis is getting weaker he is constantly clearing his throat. He gets excruciatingly painful inner leg cramps - this is sporadic and his hands will cramp up uncontrollably. He’s a mechanic by trade and we work together. I’m terrified but I never say or discuss my thoughts with him. And he’s not the type to do any research so we play the waiting game. I will advise him not to see a neurologist or go for tests I mean what’s the point. There is no cure.
MND has no pain associated with it like that.
Get him on a trial. There are some good results coming out. Also, start planning for a severely inhibited lifestyle.
There is a link between MND and the 💉
I’ve heard this theory a lot. My take on that is it possibly could have triggered MND early rather than cause it.
@@DiagnosedDad hello
Did you get the vax and could you recall any symptoms afterwards that would worsen ?
If you haven’t looked yet, please check the deana protocol. Deana is a woman still alive today thanks to her father who researched the causes of ALS for many years. He concluded that ALS was caused by a bacteria (borelia). You should try his protocol and also eat food that have anti fungus properties (garlic, curcuma). You need to eat those raw! Cooking kills their benefits
@@steven7846 no I had symptoms before COVID was a thing. Yes I’ve seen different protocols but none have helped so far unfortunately
I know a lady who developed MND post 💉 ...There does seem to be a link .
The 💉 is triggering all sorts of diseases .
Turn to Jesus He loves you, He is the healer of the body And savior of the soul, There is True Hope in Jesus, God protects Psalms 91, He is the God of miracles Acts 2:21 And everyone who calls on the name of the Lord will be saved Jesus alone saves Trust Him with your salvation John 3:16
1 Corinthians 15 1-4
Moreover Brethren, i declare unto you the gospel which i preached unto you, which also ye have received, and with wherein ye stand
By which also ye are saved, if you keep in memory what i preached unto you, unless ye have believed in vain,
For i delivered unto you first of all that which i also received, how that Christ died for our sins according to the scriptures
And that He was buried, and that He rose again the third day according to the scriptures, Take care
Practical support would be better. Donate to mnd research.
Been there done the journey. My advice, Find Jesus in your life, let him in to your heart. He helped us both so much, there is no person who can comfort you like him. Bless you all.
Done the journey? This is fatal. Did you survive?
😂😂@@imho2278
God bless you and your family
Jesus will do😊
@@imho2278What she means is her husband was diagnosed with mnd, as was I, I am 2 and half years in with months left. As a 37yr old man leaving this planet soon, find Jesus, stop being a rude clown