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Remyelination phase 2 clinical trial update

Several folks have asked for an update on my progress with the gold nanocrystal remyelination therapy so here is a more detailed assessment. I’m now officially past the halfway point in my clinical trial. there are no restrictions by the drug manufacturer or trial sponsor on publicly disclosing my treatment progress. I notice continued improvement in my MS symptoms. Specifically, I have the following symptoms:

1: Heat tolerance
2. Foot drop/limping
3. Balance
4. Double vision
5. Cognitive/Energy Issues

Cognitive issues/energy levels. After my official RRMS diagnosis 6 years ago, I felt like I still had decent mental acuity and energy to keep up with my 2 year old son, but about four years ago I started having difficulty finding words during high stress work events/public speaking. My typing slowed and work was becoming more challenging to deal with. My neurologist prescribed Adderall so I could function at work. I also used to have to occasionally take a quick nap in the afternoon to restore energy levels and respond to client needs. Current status – energy levels are high. No need for Adderall/extra caffeine. I feel like I did before I was diagnosed with MS. I am also a lot more productive at work and have the energy levels to help coach my son’s baseball team in the evenings. I wake up most mornings around 6:30 and do some sort of exercise. The therapy supposedly energizes neurons to stimulate remyelination - which is why I assume my energy levels are so high. This so far has been the biggest impact from taking the drug.

Heat tolerance issues/foot drop/balance and double vision. I just got back from a Spring Break trip to Florida and experienced real heat for the first time since I started the therapy. Prior to taking the drug, I could not be in 80+ degree heat or exercise for very long before I started dragging my right foot and experiencing double vision. I pushed myself a couple times walking for 2+ miles. While I did have a slight limp towards the end of the walking and I could sense my vision destabilizing, it was not nearly as bad as it used to be and I really felt that my heat tolerance has risen considerably. Current status: Foot drop still happens, but not as quickly as before. It’s maybe 30% better and double vision severity is reduced about the same. Visual acuity/depth perception is also considerably better and I can now read the fine print in user agreements without squinting! My balance has improved about 25%. I can now walk down and up stairs without holding the hand railing.

Numbness/stiff joints in right hand fingers, parts of wrist and big toes. This was originally my first MS symptom that I had assumed (and wrongly confirmed by my primary care physician) to be peripheral neuropathy about 10 or 11 years ago. I had a neck injury while playing rugby in college and assumed I did some damage to my C-spine either then or when I was crawling around in USMC infantry school in the early 90’s. Current status after 7 weeks of therapy: Approxiametly 20% less noticeable numbness in fingers. Minimal numbness in wrist area or big toes. Knuckles are still pretty stiff after a long day/high stress. I take a low dose muscle relaxer (Baclofen) to help with stiffness.

While I still have to take Ampyra, Baclofen, and Zeposia and a variety of vitamin supplements, I can now envision a day when I’m off of them completely and have repaired nearly all of the damage caused by MS. After hearing about my improvements, my family and friends are also interested in the therapy for potential future use to prevent age related cognitive decline and maintaining brain health. I’m looking forward to the final 6 weeks of therapy to see how far I can get in my brain healing. Also, taking this drug has enabled my rediscovery of quality bourbon without significant hangover’s. Haha! There have been no noticeable negative side effects taking this therapy.

Happy to answer any questions on my MS recovery and the clinical trial.

  1. , I am so glad the trial has been going well! And I am glad for your detailed observations as well. It sounds like you are able to enjoy your life and partake in certain activities in a pre diagnosis kind of way, which is awesome.


    I know you wrote that you haven't noticed any negative side effects, but have you noticed any interesting changes or anything of note that may be considered a side effect (good, bad, or otherwise)?


    Thanks again for sharing! This has been fascinating to follow and while I know we never want to create false hopes, it sounds like this treatment option has very real potential.


    Best, Erin, MultipleSclerosis.net Team Member.

    1. Hello Erin. I guess the only other side effect I didn’t mention is my improved morale and emotional well being. I do get overly optimistic and push myself to the point of inducing MS symptoms which isn’t fun, but I’m doing in the name of science!

      1. Thanks so much for sharing your trial progress with us, . It is all so fascinating. I hope you continue to see improvement and that this turns out to be hugely beneficially to the MS community. Keep it coming, if you don't mind! Best wishes. - Lori (Team Member)

      2. , your updates are great! And give me such hope for the future of MS management! Thanks for humoring me and answering my question 😉 . Best, Erin, MultipleSclerosis.net Team Member.

    2. No problem! One thing that you might be able help with is publicizing the trial as they need more volunteers with RRMS/PPMS to participate. The trial is at The Univ. of Texas Southwestern in Dallas. Info on study and contact details are here: https://clinicaltrials.gov/ct2/show/NCT03993171

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