Відео

Oops. Listening to this podcast I hear I made a mistake quoting the price to sequence the first human genome. This first sequence cost $1 billion not a mere $1 million.

It took me 5 years to be diagnosed this year. i find it very painful, and have walking problems , going ivig treatment at the moment. Thanks for this podcast. Age 43.

I don't believe it's as rare as some say. My GP said I was the second case of BP she'd seen that week. A month or two later, our dermatology dept gave me a biopsy and, a week later, I was diagnosed. I have blisters all over my body. I'm on doxycycline and nicotinamide which doesn't seem to do much. This week, I have been put on Dapsone. I hope this finally makes a difference. I already have a rare spinal injury and use a wheelchair. Constant pain and obvious facial and visible bandage dressings. Life is intolerable and I live in my bedroom 24/7.

Wow. I am taking a medication that you said can exasperate the symptoms. They haven’t really known what causes them, but today I by chance read up on Celine Dion after Adele gave her a hug. While reading up on this I was struck how familiar the symptoms were to mine. I can’t believe that after years of hunting and searching a hug from Adele brought me here. I can’t wait to call my doctor tomorrow.

Look into the Deanna Protocol, they have tons of great info on the root cause of ALS (Lyme- borrelia bacteria). The tests your docs run are not sensitive enough and usually result in false negatives. You have to do private testing and then treat the bacteria.

Can someone please explain if wolfram syndrome affects how the brain processes thinking ability?

Prayers🙏

For myself: I have found a portable percussion massager to help disrupt localized spasms. I use a healthywave PEMF mat at home 3 times a day. I went full keto 4 months ago and am transitioning to carnivore for the winter. The mat, diet, and massager have helped a lot. Also practicing lymphatic massage "the big 6" daily, and fascia massage and breathing exercises. I'm truly getting my quality of life back

Wow! Just an amazing podcast; so inspiring too! 🥰🎈❤️😘

We love you, Brooke!

Fibromyalgia

Where do I join you please , SPS is a battle zone for me now,

I,m progressive, Broken knee for example, Lost independence,

My B/ P goes through the roof with touch, And I can’t have therapy, Touch to painful ,

I misdiagnosed, mistreated , and it took me over ten years to find the right Dr, And hospital,

So very sorry ,

I'm someone who has personally felt the devastation of ALS. I just lost my classmate Steve last month. He was the 4th person I knew to pass away from ALS. This disease is not as rare as they would like us to think. The more faces we have representing ALS, the better. Thank you, Brooke, for being one of those faces. May God bless you and keep you. You are in my prayers 🙏 ❤️ Jan

I am a 77 year old Scotsman and I started to get itchy blisters about 3 months ago in April 2024. After 3 months of getting no where on my own I finally made an appointment to see my doctor/GP on 4 July 2024 ! He said he suspected Bullous Pemphigoid and he took a swab and sent it to the laboratory for analysis so I hope to get a firm diagnosis soon. In the meantime I am researching to see what I kind find out about BP. Your podcast has been excellent and I identified with everything Dr Naomi said. At this early stage of my own journey I felt she gave me hope and an insight into medications that might be involved and organisations that might be useful IPPS( International P& Pemphigoid Support group) plus BP Warriors on Facebook. Many thanks again!

Thanks for hosting this. I wish this could be a live event so we could ask our questions. I wonder if the artificial cornea works but doesn't function after 7y is it possible to repeat the surgery and have the same success rate. Also if the patient already had glaucoma, still wise to try the artificial cornea surgery? My mom already had cornea transferred 2 times to each eye and lost her vision.

Bravo Leslie! מזל טוב on your grandchildren!

Very interesting news for ALS patients out of the University of Saskatchewan in Canada. ua-cam.com/video/-ucjHpjlvQo/v-deo.html

Your UA-cam video content is so good. However the video does not get many views. Because your UA-cam channel has some problems. Do you want to know about the problems?

you are so young..i lost my wife at 45 yrs old ..

Brooke is amazing. My 85 year old mother was diagnosed with bulbar ALS 1 year ago. She’s had a feeding tube for 9 months & cannot talk anymore. Very sad. She only has a few months left.

I’ve heard many ALS stories, they’re all touching, but Brooke’s ability to clearly explain this disease and it’s subtleties and nuances is impressive. She’s a great spokesperson - her looks help too, of course.

My 1st Doctor from private hospital said it's ALS i went also in public hospital the doctor said it's motor neurone disease. What is the difference of 2?

Great video

Our names are Chris and Pippa Roberts from Scotland UK. Our son Joshua was born with Blooms Syndrome in 1999. When diagnosed we had no support and the doctors in the UK could not give us any advise as with it being so rare there was no record, with them, of any other people with Blooms in the UK. So the genetics specialist in John Radcliffe Hospital arranged for us to travel to New York to meet Dr German the 3rd and Dr Maureen Sanz. We had some very good friends and we had support in getting us there and Richard Branson from Virgin flew us to New York at his expense. We found out so much more when we arrived and we all had the genetic tests to see if we had the Ashkenazi Jew gene. None of us did but both Pippa and I have the mutated gene. My grandfather was from the Ukraine, but was not Jewish. Josh has all the symptoms the guys are talking about. Josh was born 12 weeks early and came out weighing 2lb. He had a blood transfusion and that’s when they found the defected gene. He is small, 5 foot, suffers with diabetes type 2. He is healthy at the moment and is monitored by the doctors here and has annual MRI scans and endoscopes and colonoscopies along with various blood tests and gene appointments. Do you guys know of any others we can speak to, especially in the uk? We haven’t looked at the website as when he was diagnosed in 1999 there wasn’t anything.

I’m 60 and just got diagnosed with bp and yes I went through this also the itchiness was insane

My mother just have BP at 85 years old

There’s a doctor that is running a trial with ALS with ketogenic diet and fasting : ua-cam.com/video/9MX83IKeIvc/v-deo.htmlsi=yn_3twxZjqRC-h6N And check out this video, too: ua-cam.com/video/t91rTD0k0SA/v-deo.htmlsi=7nhAEqL5DZXpWQwA

😢

My heart breaks for this family. Sending so much love to Myra and Matt ❤

I just got the diagnose, after almost 4 years with dropfoot, and its still just my legs just like you. I live in Denmark

My symptoms are exactly like Jennifers. I just went to the Facebook page. And I had the most stress in my life before this started. So much stress that I thought for sure I would have a heart attack.

Would you be interested in being a guest on UHTM?

I would like to share that Dr. Carey is my neuro ophthalmologist and my hero. He has helped me tremendously with my idiopathic intracranial hypertension condition. I have been under his care for more than 5 years and I can say he is the best of the best at Wilmer Eye Institute in MD.

You need to have a methylmalonic acid blood test. You might just have a low B12 at the tissue level, which causes symptoms that are often misdiagnosed as ALS. A normal B12 serum test is no good, you need to have the methylmalonic acid test. When this acid is elevated, it means your tissue B12 is low. This acid will eat the myelin sheaths off your nerves. It also blocks enzymes in the urea cycle that convert ammonia to urea, which causes an elevated ammonia level.

She is so pretty ❤😢

Brooke is a beautiful soul and she looks beautiful too. She will make a difference for this nasty disease. I will definitely be contributing to the fundraising for ALS. I will be praying for this cause. This is a great channel and I will check out your other videos. ❤️🇨🇦🙏

If newly diagnosed with ALS and just starting to show symptoms I would think medication that will halt or reverse would be fabulous. It is heart wrenching to know it failed for patients who were in further decline. Keep working on something for them, but that one medication should pass and be given to those just diagnosed.

The 25 year old one put me in the hospital with sky rocketing blood pressure. I'm doing fine with the next one. Number newest is digusting!!! Tastes like grapefruit rinds ground up in a drink. Plus diarrhea after consumption...no way to live.

I have genetic ALS. I relate to so much of your journey! I am 72 and i thank God for letting me live this long!

It killed my dad and youngest brother

I have heard about people developing ig after lyme disease . I have had lyme and lots of strange neurogical symptoms so did a bjt of googling . Not saying that it is the case here. Of course not, but it is worth considering.

<3

Brook you're a inspiration a quick question for you. Have you thought of stem cell to help or is that something possible. Just a nugget to ask you in my prayers ❤❤❤❤

Amen Brooke this disease and als diagnosis is very hard hard to deal with I considered suicide and cried two. Follow u and yours progress😢

How do I find Jennifer on Facebook MMN support groupm

Glad I found y’all Thanks for sharing yr story