LDN : Hi again everyone! I just want you... - My MSAA Community

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LDN

positiveness profile image
β€’17 Replies

Hi again everyone! I just want you to know that the Low Dose Naltrexone (LDN) is still working well for me. I continue to gradually get better and better, thank God.

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positiveness
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17 Replies
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jimeka profile image
jimeka

I am pleased that you have found something that works for you, blessings Jimeka πŸ¦‹ 🌈

Raingrrl profile image
Raingrrl

Hi @positiveness! I hope you don't mind me asking this but are you taking any of the DMT's or just relying on LDN?? I have a good friend with rheumatoid arthritis that swears by LDN and gave me an article about it that talked about its use for MS patients. I've been curious about it and wonder if older patients like myself might be better of using LDN than some of the biologics with all their risks.

positiveness profile image
positivenessβ€’ in reply toRaingrrl

Hi Raingrrl! Yes, for the time being, I am also using Gilenya and Ampyra. However, the Gilenya is increasing my liver enzymes, so I am hoping to soon go off of it. I have been on LDN for about 7 months now, and am continuing to see improvements.

melack01 profile image
melack01

Hurray!

BillD999 profile image
BillD999

positiveness , Can I ask how long you have been using this and how long it took for you to notice any benefit? I took it for a while, a few months I believe, and I didn't see any benefit so I stopped. But I have heard some reports of people like who do see some improvement,

Good luck!

positiveness profile image
positivenessβ€’ in reply toBillD999

Hi BillD999! I have been taking LDN for about 7 months now. It took 17 days before I took two steps without a cane. Mind you, I still have to use a cane for outside, but I am strengthening leg muscles Nm I haven't used for 13 years. I am now to the point of pushing the shopping cart at the grocery store, instead of using the battery operated cart. So yes, it does take time, and we need to be patient.Even though it's slow, I can now write with my dominant my and again. I am also more flexible now and I don't have to deal with fatigue any more. Let me know if you have any more questions. I will reply a lot sooner this time.

Nom_De_Plume profile image
Nom_De_Plume

positiveness So happy for you!! I love to hear when people are benefiting from their meds, especially when they are IMPROVING or regaining function on them!! Yay!! Woohoo!!!!!!!! πŸ˜€

positiveness profile image
positivenessβ€’ in reply toNom_De_Plume

Right, I have definitely been regaining function. Functions I never thought I would regain. I have been so inspired by my benefits of using LDN, that I am currently writing a book about it.

Nom_De_Plume profile image
Nom_De_Plumeβ€’ in reply topositiveness

@positiveness

That's awesome!! Fascinating too, the benefit you've had!

Would you mind sketching out for us your MS hx, at a high-level, please? (Like year dx, # DMTs tried, RRMS? And whatever else you think is relevant?)

Any idea why formal clinical trials haven't been done? (I could look it up but I'm sure you already know!)

Erash mentioned MoA. Can you elucidate any of it? Can you hazard a guess as to how this might work specifically with the MS disease process?

You've mentioned many interesting results that seem to cut across the MS "experience," not just one area. I remember you mentioned improvement in your walking, pain relief, and reduced spasticity. That's quite remarkable! 😊

Please share what you can when you can!

Thanks for bringing this to our attention and wishing you continued success with the LDN!

Lisa

kdali profile image
kdali

Great news! Keep us posted please.

positiveness profile image
positiveness

I wouldn't mind giving you more information at all. I was diagnosed with RRMS in 2004 and started on copaxone. It was before the auto eject pen, so I had to manually put the needle in skin. It wasn't a problem for me until I had to do my abdomen. I later tried novantrone (a type of chemotherapy), Tysabri, and am currently on Gilenya, LDN, and Ampyra. I will be going off of the Gilenya, because it increases my liver enzymes.

positiveness profile image
positiveness

I have to do shorter replies now, because I actually already r r tried to reply to this message, but my system froze and I ended up losing my message. I was upset, because I had a long reply at the time. Things could be a lot worse, though.

I think there hasn't been much news about this drug helping people with MS and other autoimmune diseases, because the pharmaceutical companies missed their ship, and can not reap as much money from it now. Especially from treating MS and other autoimmune diseases. LDN has also been shown to help with cancer.

positiveness profile image
positiveness

Naltrexone was originally approved by the FDA in the 1980's at 50mg to treat people who overdosed on drugs such as heroine. A couple of Pharmacists later realized that if given at a low dose, then it would especially help people with MS.

positiveness profile image
positiveness

I also want to mention that with the LDN I have been taking for a while now, I don't suffer from fatigue and I am not in a brain fog like before. It use to be so hard to shower and do things around the house, because I just didn't have the energy, but now I do have energy. it feels so weird to be able to do multiple things and not be totally exhausted.

positiveness profile image
positiveness

I also use to have the need to take multiple naps throughout the day, but I don't have to any more. Another strange feeling for me. When I do multiple tasks around the house and not feel tired, I usually say to myself "aren't I suppose to feel tired now?"

positiveness profile image
positiveness

I most certainly can and I would love to. When I started taking LDN about 14 months ago, I started at 4.5mg and I'm currently taking the same dose.

positiveness profile image
positiveness

Right, I have read that 4.5mg is the highest amount, as well, for help on treating MS. I sure do hope that everything goes well for you.

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