I was diagnosed with RRMS 15 years ago, I went onto a blinded trial in 2009 (Lemtrada) I currently take no medication for my MS and since 2010 have preferred to use alternative ways to relieve pain or ease the symptoms of my MS - it seems to be working so far.
I put videos out on Monday's (7.30pm GMT) and I share ways that help me to relieve my MS symptoms as well as updating you on my MS progress (possibly future progression) Much of my interest is about brain health. Most of my experiences/knowledge comes from the professional help that I have received over the 14 years since being on my Lemtrada trial and I owe a great deal to my health care team at the Heath Hospital Cardiff.
All of the money raised from this channel will go to the MS Society. So I'd love you to subscribe so together we can help raise money for research.
I’ve had PPMS for 30 years I figure, only diagnosed 7 years ago, last 3-4 it has really started to limit me. Only just started Ocrevus 2 weeks ago. I should have have been on it years ago, guess I could blame Covid but also my fault for not pushing for it and going along with Dr. Saying you’re not bad enough yet. So now I’m bad enough but damage is done and there is now going back. All I’m saying here is don’t sit back and take the let’s see attitude, it’s your body so push in a friendly way or see another Dr. That’s my truth. Keep your head up. 🙏
Is their any connection between L-lysine and Hashimoto thyroiditis and/encephalitis . I’m living my 51st year of hypothyroid, Hashimoto thyroiditis and possible encephalitis. And one day I read about my brain symptoms and the benefits of amino acids. Lysine was listed but I had a bottle in my arsenal of supplements and looked up their benefits. Inflammation, check; Anxiety, check. I think I stopped their and said I’ve taken them before let’s see… Mind you at this time I was having multiple absences seizures and probably just feeling overwhelmed and wreck less and tried it. And two weeks without a seizure and suddenly enjoying the productive side of me I haven’t seen since I was ten years old. I know the lysine didn’t transform my life but it did greatly improve it. The Superfood and plant-based protein smoothie, immune suppressant, acupuncture, regular castor oil pack for detoxing my liver and thyroid with exercise together ACTUALLY transformed my 51 year journey to that one moment in time I’ve held close because I didn’t want to stop until I could be that strength in me again.
I went through the PIP process a couple years ago, got 0 points, then 0 for mandatory reconsideration and again 0 for tribunal... what a joke. I've now reapplied, this time with third-party help and I will be recording the phone assessment.
Hi, i have some question,they sent me a letter that i need to send my original passport ,and letter from home office,should i send because im scared to send it what if something happen? Thanks
The most difficult task for me is to admit to myself my condition and explain to others. Years later even my wife does not have a clue what I am going through day in and day out. Thank you for encouragement.
Thank you so much for sharing I have Lyme, M.S. adn some new mass cell Hystamine, auto Imune also, thinking of Lemtrada doing tons of research this really helped hearing someone who went through it and not just Drs adn studies, Thank you soo much for sharing I'm in New Jersey in the U.S. your sharing helped someone that far the net is good for allot ;) Renn is a musician from Brighton near you his music speaks allot to diagnosis lie ours though he had Lyme like me first then autoimune, it's a crazy cycle
You're so welcome, Lemtrada was the best thing I ever did, keep researching because you need to make sure it's right for you. Thank you for watching, your watch contributed to helping out MS research as this is where the channels money goes to. I'll check out the musician 👌🎶
After 6 months of waiting, I got my decision letter. They scored me 0 on everything, and on handwritten part, it literally just full of lies, stuff that I wasn't even asked about, and some that I was asked about, but they're claiming the opposite of what I said.
Iv written 10 pages detailing all the lies and what points I should have received and sent it of for a mandatory reevaluation. It's absolutely disgusting that they can just make up so much stuff. The person they've described is literally the opposite of me. That man should lose his job. If illegal for me to lie on these forms, so surley it is for them to? If the mandatory review and the tribunal fail, can I report him?
Today i had a 2nd pip assessment over the phone to get more information, it was about 2.30pm and lasted about 25 miniures, after it ended i turned off my phone to get some peace and chill out a bit, i put some music on, then banging on my door and i could hear shouting and radios, it was two paramedics, telling me i had been calling my GP threatening to kill myself, we never talked about low mood at all in the 2nd assesment and in the 1st i never said at anytime i was thinking of doing anything, all they asked me is if i'd ever had any suicidal thoughts, it was pretty embarressing, what my neighbours must think i dunno, i've no idea what the assessor has said to my GP sugery for this to happen, i was shocked, shaken and embarressed...They left and about 30 minutes later they were back banging on my door, this time with a member of the Crisis team on loudspeaker wanting to know why i had been calling my GP threatenin suicide when i had not, last time i called me GP was too book a nure app for a vitamin enjection...crazy...i have no record at my GP practice of suicide or threatening to do so, just some depression associated with long tern illness.
Few years ago i had a accessment i went there and it was full with people waiting, i was overcome with stress panic anxiety i had to get out of there, i phoned pip told them what happend they reccomenfed a home assessment which iv had helpd me big time fortunate to have understanding pip workers.🎉
So amazing! Came across your RU-vid totally by fluke… I was a client of yours a few years ago. You inspired me to take a new career! Thank you and take care. Nye ❤
I'm so sorry to bother you, I applied for pip in march had my phone call 2nd may, had a txt on 3rd may saying my assessment is with the assessor and then a txt on the 20th saying the still haven't made a decision, so I requested my assessment letter and at the back page it says based on the claimant's likely future circumstances it would be appropriate to review the claim in 2 years what does that mean please? Thank you x
Hi Laura, my name is Kerrick. I live in Pennsylvania. Have MS and similar story, had a very active lifestyle and rode motorcycles, a Black Beauty. 1981 Yamaha 650 Midnight Maxim. Noticed I was loosing my balance when riding, thought it may have something to do with blood pressure, fatigue, whatever. Quickly afterwards went numb from waist down. Went to family doctor about symptoms, he immediately sent me to hospital for testing. All of them including spinal tap, MRI, etc. I thought that it would be temporary at first. Was wrong. Immediately lost all balance in my mobility, walking, speaking, eating, bowels and bladder. Diagnosed 4 years ago, same as when you posted this video. Bummer it took that long for me to discover it especially since I've been doing not much of anything besides watching RU-vid since I'm now disabled. Coping has been difficult, I miss the great lifestyle that I had and I'm sure that you do too.
When I went for a PIP Appeal, as soon as I reached the minimum necessary points, the assessment was stopped and I was awarded it. As a person might have a stroke or heart attack proceeding I can in one way understand it, but it also stops the person carrying on and being awarded the complete number of points relevant to their case. That is important as PIP could be stopped or questioned as valid if just one issue is reassessed in later interviews, when the person might have had many points more on their claim, rendering that as irrelevant to questioning PIP.
THANK YOU FOR GIVING US ALL THIS INFORMATION, THAT YOU RESEARCHED ABOUT L-LYSINE. I HOPE TO CONTINUE TO LISTEN TO YOUR VEDIO'S ..YOU HAVE A NICE AND CALM VOICE ....THANK YOU. BE BLESSED 🙂
I have optic neuritis in my left eye, i had intermittent vision issues and pain which grew in intensity and frequency over many months. Then it grew to a point where vision in the left eye was badly affected and it no longer hurt. I had lost my mum and dad in the space of four months, so i wasnt in the best of places mentally so didnt take action like i should have done. When i finally did go to the opticians all the layers of my eye had thinned out, the optic nerve was badly damaged and my left eye is not reactive to light. The optician told me there is little chance i will recover sight in that eye. Im now awaiting an urgent referral to eye department in hospital and referral for neurology as MS is suspected.
Oh no, sorry to hear this! Also sorry for the loss of your parents, emotional stress is always the toughest on the body (and unfortunately MS) I do hope that your appointment goes well for you 🙏
Thank you, at the moment I'm finding wearing an eye patch is better as the poor vision in the left eye throws my senses off if that makes sense? I feel like I can see better with the left eye blocked off.
I am always left confused when told to avoid stress. How does one do that? If life is sending so many dreadful and frightening things to navigate, how does one avoid the resulting stress?
When life is stressful and sending us challenging stuff to navigate, the simple answer is that you can't avoid stress. It's as simple as that. You can however step away from situations which might be causing that stress (where and if you can)
Totally cleared up shingles in me in 3 days.... outrageous ... I watched Dave Letterman wait 3 months to get rid of his shingles using some other treatment. Epstein Barr Virus is a Herpavirus ... so... L-Lysine is effective.... My wife has MS and is gaining ground against the symptoms of MS using LYsine
So nice to hear that! I gave a bottle to the lady who owns the manicure place cause she's been suffering from shingles since her second dose. I had a feeling from the little I've read that it would help! She promised to take them and hopefully I'll get some good news soon 😊
@@aalliaandreadis5109 Its good to go as high as 3000mg per day. you want to be aggressive against such an invasive virus. If that's too much... 1500mg might do it. it depends on her weight and size.
They are limited as to how many they let through AND get cash for turning you down. The Tory government are a criminal & terrorist organisation. They want to steal from the needy to feed greedy pensionscroungers. The generation that steals off everyone.
I’m looking at using these soon , cutting down my supplements and taking one multivitamin. The b1 and b2 seems quite high. I will only be taking one a day
The benefits of lysine supplementation are more related to its antiviral properties and less about directly influencing MS. There is no significant evidence to suggest that lysine can affect MS directly. On the other hand, BPC-157, a peptide with potential regenerative effects, is known for its healing properties in various tissues, including muscle, tendon, and nervous system tissues. Its regenerative capabilities suggest it could help in repairing the myelin sheath or nerve cells damaged by MS, although direct research on BPC-157 specifically for MS is limited.
Hi, have you heard of low dose naltraxone (LDN)? It's not a normal ms drug but immune system modifier. I'm starting it tonight. There is lots of good results for different autoimmune conditions including ms
A great deal of the process is how questions are answered, both written and verbal. Never say words like 'sometimes', this is a 50/50, we don't have our conditions 'sometimes'. If asked how many minutes you can walk for, your answer, if you have limited mobility, has to be i don't measure my walking in minutes, but steps. You have to bring your conditions into the environment and let them know what it is like 'most of the time'. The 'enemy' is not the assessor, but the person with no medical background who issues the points for each of the descriptors, from the information provided. Under all circumstances, get a brief summary from your GP's practice manager, this is free and legally should be made available to you and takes no more than a day or 2 to collect. The DWP will not contact your GP, or any other medical team, regardless of what the GP receptionist tells you. If you have no medical papertrail, you will receive 0 points
For my first PIP claim I had to have two assessments after mandatory appeal In my first assessment they scored me zero second assessment I scored 4 went to tribunal where there is a judge because it’s a court a doctor and a disability specialist and scored 28 awarded full PIP never give up it’s what they want
I had my first episode of optical neuritis this morning. I woke up and all of sudden I felt like my eye was being stabbed. Vision was blurry, but the pain-OMG I couldn’t bear it. I start crying and screaming. My husband ran in our bedroom and no did not know what to do. I went to the ER and they gave me a steroid shot. It definitely helped. But my eye feels like something is in it nonstop. Tomorrow morning I see the specialist eye doctor. I’m scared. I don’t want to lose my sight. Thanks for sharing.
luck seems to play a big part of the assessment, I got my pip based on my mental health but not on mobility which I am in the process of appealing , I hope My reassessment is a tribunal as I think it will give me a reasonable chance to show I need it ,,
What do I do about these old people, NHS, the Left, Employers and Government people in the benefits department who all conspire with each other deny me jobs and also deny me benefits and try to award me lower amount of benefits? How is a person suppose to survive financially?
Diagnosis should be enough for them. I can't stand having to do this each year. It's like they want you to fake it or lay it on thick in front of them so they can deliberately catch you out if you do. It's a ridiculous and draconian method. My condition worsens year after year. I still only get the basic even though I haven't been able to work since 1999 and have recognised mobility issues by my council and GP , I have never been awarded anything for my mobility from PIP. When I was on mobility with DLA previously for years. I'm suprised that they haven't asked for the money back if PIP claim I have no mobility issues. It's unbearable the stress of being unfortunate enough to have a progressive disabled that you are pressured to prove it when your diagnosis already proves it for you. I have more than 10 major disabilities. I get lowest standard rate on PIP. On DLA Before half my disabilities I received Higher rate care and I think it was mid rate mobility. Before I was diagnosed with 5 physical disabilities on pip . Bog standard for getting progressively worse.
I live next to a pip assessor,who has told me me that after stopping being an assessor. They are not fully trained in anything,apart from reading a computer screen. They get £80 per refusal,and that is better for their pockets. Never say sometimes,maybe,or anything they can twist. These people are profiteering,never trust any of them,they try and be friendly,but really after you to make a mistake they can use against you.
