Wondering how this affects combination with a DMT especially the DMT is Tysabri. Wondering if a MS Patient would have to switch to a B cell DMT in combination with this new study?

I had HSCT 9 years ago at Northwestern when the stage 2 trials were ongoing. Since then I would say that I’m doing better than I would have without it, but I think I would have remained on a DMT that was effective for spms looking back. I had leg issues, and I am still walking 17 years after diagnosis, I think the smoldering inflammation could…

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5/2019 aHSCT (Moscow)<div>

Since HSCT:

HALTED RRMS progression

No new lesions

No exacerbations

No DMTs being used

 

Only HSCT provides potential to HALT MS progression (works in most cases, be sure to research locations & efficacy, cost, etc.).

NOT A CURE:

They will not tell you this is a cure, but only a way to halt MS progression…

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Lemtrada eventually took out my thyroid.<div>

 

Could not walk for 5 days after first course of infusion.

 

 

 

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It took some time, but it’s great you were able to get that feeling back. Has your doctor said anything about it?

Interesting study on using red blood cells to help the immune system recognize myelin as not a threat!

study: New MS cell therapy builds immune tolerance to protect myelin

🔹What are your thoughts?

As I said first posted when I read about lion’s mane you have to factor in when taking it by mouth you lose a great amount to stomach acids. When I first started taking it I was taking it I finished 1g after 1hr. I noticed after 12 weeks I found I could feel texture of carpet with my feet and to past the pin pick test took approx 1 year.

That’s great!

As I said I got heat sensations back to my feet which I had lost due to ppms.

If you are looking for information on support groups, I am adding the link here!

link: Multiple Sclerosis support groups | Multiple Sclerosis News Today

Hey Alan! That’s interesting. It seems like the lions mane can help balance body temperature. Did you only notice your temperature sensitivity as a change? Anything with joints/bones?

Thanks for sharing! That’s awesome that you decided to do it & has changed the course of your health. I heard about Mexico & Russia as top places to get it done!

I love hearing about people’s experience who have gone through it. Like you said it’s a lot of work and everyone is different.

What changes did you notice from getting it?

I had aHSCT 2 years ago in Mexico the top place to get it there are 3 places in the world that are very good. Lots of “snake oil” places so do research. It has stopped my rapidly evolving ms and no new lesions since I had it done. I wish I had it done sooner but I didn’t have the money or the research I had to crowd fund for most of it. I was…

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If you are interested I take 1g of lion’s mane extract in 250ml of hot filtered water at 80c dissolve in it when cool enough take some in the mouth swirling it around your mouth gums and tongue. The reason I do this mushrooms are one of the hardish to absorb into your body. But doing it this way when concentration is right it can get into… Read more

Since I’ve been drinking more electrolytes, I found this water, Joyburst, that contains electrolytes & lions mane. I thought that was interesting and had to try it. I’ve taken lions mane supplements for a short time so couldn’t see any changes.. maybe better focus?

Has anyone tried these? Any experience with lions mane?

Also, this is…

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HSCT has been around for a while, but few know about it. I read about it when I was diagnosed, but I learned it isn’t a quick decision to make with MS. There’s a lot to think about. There have been great reviews from those who went through the procedure!

Have you ever looked into this?

It’s always great to have a positive attitude when dealing with health issues but we are human and it’s not always the case. Sometimes we just need to vent, rant about what is going on in our health journey.

Ben does that perfectly in his latest column:…

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Taking a DMT is helpful for some, but it can come with unwelcome changes. Have you experienced serious side effects from a DMT? What was your experience?

Many people in the MS community have mentioned how cannabis has helped with their spasticity or spasms. Even those who have issues sleeping!

Have you tried this for spasticity, stiffness, or spasms?

Here is an article about cannabis based therapies: Certain cannabis-based therapies may help relieve spasticity in MS

I started adding electrolytes to my water (only day 2 😄) because I wasn’t feeling great last week and thought I needed to hydrate more.

I used to drink Vitamin Water and always noticed a difference in my energy. Coconut water too, which I love!🥥💛

Curious, what are people’s thoughts on electrolytes? Does it help you?

That’s a good point that you brought up about accepting, giving in to needing an aid. It’s not an easy thing to do or accept. Glad you are doing what you can to prevent those falls. Thanks for sharing!

Did you just buy the aids, or did you have to go through a certain process or program?

I’ve never gotten my insurance to pay for a device. That being said, in my prior life I sold insurance. The companies are known to deny claims and move forward. I agree that getting your doctor involved in the process as well as having them hopefully understand the key words to push your claim thru is KEY.

 

The most difficult part of the…

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So sorry to hear that, Diane 😔. Are you able to get around without one? Is anyone around to help you?

I would assume your neurologist would help in the process or even write a letter if that is needed.

Hey, Leslie! That is awesome. Having it for many years and in remission is the goal. Is it just the exercise and DMT that contributed to that, or did you also change anything in your diet?

I have been exercising seriously with weights and walking for 33 years. I believe it is a large part of my success navigating MS. I have had MS for 38 years and am able to walk unaided. Exercise and medication are the keys. Definitely seek out one of the disease modifying drug options for MS. I have been taking Ocrevus for 9 years. I am…

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I have trying to get one through my indurance. This the worst process that I ever had to go through. I started in February. It is now August. Still no scooter or wheelchair.

I have received denial letters with no explanation.

I am convinced my insurance is giving me the runaround.

Do you use any mobility aids? What was the process like for getting one?

Nope…just the Eagles, and lots of them!

Hey Greg! That’s great—something I need to get back into doing. PT is also helpful. Have you been doing it since your diagnosis?

I also do resistance training 3 times per week. In my case I believe it really helps. I also started a PT program. I meet with my PT 2 times per week. She has me doing exercises to improve my function and I’ve noticed benefits from that too.

So cool! Any other animals?

🤩 Amazing! This trip looks like it was relaxing and a great experience. The water looks perfect, too. Thanks for sharing these with us. ⭐

Got to see alot of bald eagles though!

The cruise experience was awesome! Didn’t get to see any whales breaching or anything but the entire trip was memorable!

About 5 years ago! We flew into Seattle then Juneau! Then a brief trip from Juneau….cant remember where to, but it was lovely! Here are a couple photos!

Would love to go to Alaska! Did you recently go there? How was the cruise experience?

That’s great! How long have you been doing it? Has it helped you?

Yes, I lift weights three days a week.

Cruise through and around Alaska was really awesome as it wasn’t as well hot! Food for thought-avoid the heat!

What are some of your favorite places to go during the summer? Do you have a place that just makes you happy?

This could be the beach, local state fair, boat docks, fishing, anything!

I love anything by the water or being in coastal towns. Definitely captures the summer feel!
🌊🐬

How do you take care of your mental health while living with MS? 🧡

I find these tips super helpful in my personal self-care journey: https://bit.ly/4gUAHxt

I’m sure many of us have heard the benefits of resistance training, but came across this article talking about it protecting nerve cells.

article: Pilates, resistance training exercises may protect nerves in MS

(This is the article I was referring to, @Ary )

Does anyone participate in resistance training?