Thanks for sharing these detailed changes that were done in your home! I’m sure it will help many people going through the forums. It’s great that you adjusted in ways to feel comfortable and at the same time, benefit from it, like the exercise part.

Thanks for sharing, Jake! When did you decide this purchase was needed? Did the doctor bring this up?

We use the ZT16 (pic below) as it allows for standing up as well as seated. Not expensive and, with help, can be lifted into and out of the back seat or a car. It is will also turn within its own length.

Hi, we have adapted the house progressively. As the SPMS has progressed over the years we have done the following in this order:

– fitted wooden slopes to indoor house steps to reduce the risk of tripping. They also are handy for stretching the Achilles tendon while chatting.

– installed hand grab rails over time. We looked to where there…

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Does anyone also have this experience of nearly complete recovery for perhaps 40minutes after immersion in cold water?

My wife has SPMS and relies on elbow crutches and supportive shoes in order to walk a short distance, perhaps 10yards/meters.

The routine.

She will crawl on all fours into a sea beach or lake (we have assured…

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Do you have a caregiver helping you in your journey? Maybe you are one.

How is it navigating your health with one? Or what is your experience being a caregiver to someone with MS?

New therapy moving into Phase 2 for those with progressive MS! SPMS + PPMS

Study: New therapy moves closer to Phase 2 testing in progressive MS

Did you have to make any accommodations in your home because of changes in your health?

Cognitive issues in MS happen but isn’t spoken about as often.
study: Rehab program may help MS patients manage cognitive issues

Do you deal with this? What steps have you taken to improve it?

I’ve always loved smoothies! Creating different combinations excites me. When I was on a certain DMT, I lost a lot of weight, and my appetite just wasn’t there. I looked up ways to add protein to my diet and gain some weight, and smoothies were listed. I stopped for a while but just got back into making them daily. I think it’s been working!

Do…

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No need to apologize! This information can help others. Time is a factor, it seems, so I wonder if those newly diagnosed get to hear about it as an option to look into.

Love that! When did you start, and what benefits have you noticed?

Thanks, Ian! I haven’t heard of it, so I’ll take a look.

I’m very happy with my progress doing this diet

Diet going great always picking up speed and improving

Where in Mexico did you go?

I’ve looked at CellTX.

I heard about Vitamin D and sun exposure being important when it comes to MS. When I was diagnosed, I was told I needed vitamin D supplements. I grew up being outside a lot, tanning like crazy, and loving the sun, so I always questioned this. ☀

study: Lifestyle factors may reduce or fuel inflammation in early MS: Study

The study doesn’t just… Read more

You should have a look at The Root Cause Protocol

https://therootcauseprotocol.com/

Theo,

<font color=”rgba(0, 0, 0, 0)” face=”inherit”>I trust my reply to you comes </font>across<font color=”rgba(0, 0, 0, 0)” face=”inherit”> in the way I intend it to…</font>

My first thought when reading your message was:

While you are waiting and watching for the results of studies that will not be complete for years in many cases, MS…

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Yes, I checked out one or more clinics in California as well. I believe specifically one in Southern California close to were I lived at the time.

They did NOT perform chemo to wipe out the immune system. I learned over time that a procedure that does not chemo the immune system is NOT aHSCT.

Checked out clinic in South Americas well. …

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I was just going to ask if this would help with Secondary progressive. It sounds like no. Am i correct?

Unfortunately, I was diagnosed 2007/2008 and did not learn of aHSCT until late in 2018 and headed for Moscow 5/2019. By that time my RRMS was transitioning to SPMS, which lowered my chances of successful aHSCT, But, after reviewing my MRI, Dr. Frederinko (Moscow) thought possibilities were good. I believe I got hi, the MRI before making…

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Thank you for sharing Theo! Are you leaning on taking this approach? Are you on a DMT now?

When I started PT years ago, my therapist would always bring up my core strength and how I needed to work on it. I didn’t understand at the time what that was and how it can affect me.

Years later and I get it.. My core strength has changed and realize how important it is!

Have you noticed a change in yours since diagnosis?

Three trials I’m watching compare autologous HSCT with high-efficacy MS treatments. In the US, the NIH-sponsored phase 3 BEAT-MS trial (NCT04047628) studies treatment-resistant relapsing MS and is expected to finish around 2029. In Europe, the phase 3 RAM-MS trial (NCT03477500) compares HSCT with high-efficacy treatment; I’m watching for its…

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Haven’t looked into this ! What have you found?

With experimental treatments, it will take time unfortunately. Are you on a DMT?

Interesting! I’m happy you noticed improvement with your hair and helped with confidence. That’s always a plus! 🙂 Biotin also helps with this area.

How has the diet been for you?

I’m trying 2 spoons in my morning smoothie but thinking about stopping as ChatGPT says I get enough on my Wahls paleo diet anyway.I think my hair has improved as I always just had a number 1 all over as my hair was dead and there were a few patches.now ive actually got some confidence and it’s growing back better.I was also taking biotin…

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Great that you took the initiative to learn and create! I hope you start to see/discovrr more benefits.🙂

Some people have been diagnosed for many years, while others have just started the journey.

Would you change anything from the beginning of the diagnosis? Maybe treatment or the whole approach to how you manage?

Does anybody have any experience or thoughts on nicotine treatment?

Very optimistic about the CAR-T approach. The Chinese trial with in vivo modification of naiive T-cells could be a game changer. But as with everything, progress to approval takes much too long for people with this horrible degenerative condition.

We’ve frustratingly just gone back to the overcautious and slow norm after Covid showed the…

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After reading that collagen supports bone health, hair, skin, and nails, I started adding it to my smoothies. I’m hoping to see a difference!

Does anyone take collagen? Notice a difference?

As I said I read the papers by Renvue Sandyk dated late 1990 and it was treatment at 7.5picotesla so I started to work out how to do this and I picked a a Spooky2 xm generater and a feeltech fy2360h so I then spent some time working how to programme them to work in manual mode which I managed I found the feeltech was slightly quicker to set up.

Thank you for sharing! Sorry that the stem cell therapy didn’t work. Happy that you continue to stay active and do what you can to stay on top of your health.

Looking back, would you have done HSCT?

I hope the appointment goes well and you get some answers!

That’s interesting that you tried that Transcranial method. I had to research it to understand what it does. 😄 Where did you get it from? How did you decide to try that out?

That’s great! It’s nice to hear success stories! I was actually gifted Everyday Miracles by one of his patients whose story is in the book. I still have to read it!

📚

For those with PPMS and SPMS who haven’t responded well to available treatments. Check out the study!

study: FDA gives go-ahead for trial testing cell therapy for progressive MS

I know someone that had the procedure successfully done in Russia. She has been symptom free for 15 years. She recommended the book Everyday Miracles by Richard K. Burt. It was very informative. Unfortunately, not effective for progressive MS, which is what I was diagnosed with in 2024.

How long till you started feeling a difference?

Being diagnosed with MS doesn’t have a set time/day. It comes when you least expect it. For some, it created a pause or stop to certain goals, tasks, or projects they wanted to accomplish. In this column, Desiree (Hey Desiree!) talks about starting her home bakery despite the uncertainty of symptoms. 🍰

column: …

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No nothing I not seen him for about 2 to 3 years but I got a appointment in October. I tell him then. Now stopped taking the lion’s mane after my last appointment I then found that after not taking the extract I started to lose my sensations again. After a couple of months my wife didn’t want me to take the extract she thought it made my… Read more

well I’ve had MS x > 30 years, I now have chronic progressive MS, I was relapsing remitting x 20 years, now chronic progressive. I was a family doctor for 30 years and retired 8 years ago on my neurologist’s advice ” you just aren’t remembering things well enough Adrian, it’s not safe for you to continue practicing” so I retired a few…

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