MS and Alzheimer's

[serankin]

Unfortunately I have one copy of APOE4 and multiple sclerosis (MS), so two potentially dementing things. Although, recently there was a post on the Bart's MS blog about how neurologist don't see MS and Alzheimer's together and are theorising that MS is somehow protective against Alzheimer's. Anyway, Alpha lipoic acid is currently being trialed in MS to reduce brain atrophy in secondary progressive MS. A small study found it reduces the rate of brain atrophy by 60% which effectively normalised it as everyone's brain shrinks as they age. It has also been trialed in a small study with Alzheimer's as was found to slow cognitive decline. I take it in the hope that it is preventative in Alzheimer's as well as helping my MS. Unfortunately, I already suffer from cognitive problems due to the MS.

[serankin]

Link to the MS blog https://gavingiovannoni.substack.com/p/ ... -it-due-to

[SarahPenelope]

Link to the MS blog https://gavingiovannoni.substack.com/p/ ... -it-due-to

Dear Serankin

Thank you for your post and for the link to the blog. I am a support team intern and I warmly welcome you to our forum and supportive community. It's great that you found us and I hope you find the content and discussion helpful.

You clearly have a great deal of knowledge about MS and the trials that are ongoing. I think science is progressing so fast and it is exciting to think what will be discovered in relation to brain health in the next few years. I am sure you also know of the work of Dr Terry Wahls. When you feel comfortable, we would love to hear more of your story, and what works for you.

In relation to ApoE4, there is a wealth of information on this site. If you haven't had a chance to explore it yet, then I have listed some links below.

Primer. Written by a practicing MD (also with ApoE4), this explains the biochemistry of ApoE4 and also provides research-based prevention strategies. There is a lot of information so please don't feel overwhelmed. Take it slowly and find a section which resonates with you and maybe start there. Remember that small changes can make a huge difference to brain health.

How-To Guide This will help you to navigate the site.

Our Stories. Sometimes reading the stories of others helps us realize that we are not alone and can be a source of inspiration.

One quick tip, if you are responding to someone, it is helpful to use the quote button in the upper right corner by your username. This will also trigger an email that a response to the post has been submitted.

I'm so glad you have joined us on this site. Please feel free to reach out anytime if you need support or have any questions.

I wish you all the best.

Sarah

[serankin]

Link to the MS blog https://gavingiovannoni.substack.com/p/ ... -it-due-to

Dear Serankin

Thank you for your post and for the link to the blog. I am a support team intern and I warmly welcome you to our forum and supportive community. It's great that you found us and I hope you find the content and discussion helpful.

You clearly have a great deal of knowledge about MS and the trials that are ongoing. I think science is progressing so fast and it is exciting to think what will be discovered in relation to brain health in the next few years. I am sure you also know of the work of Dr Terry Wahls. When you feel comfortable, we would love to hear more of your story, and what works for you.

In relation to ApoE4, there is a wealth of information on this site. If you haven't had a chance to explore it yet, then I have listed some links below.

Primer. Written by a practicing MD (also with ApoE4), this explains the biochemistry of ApoE4 and also provides research-based prevention strategies. There is a lot of information so please don't feel overwhelmed. Take it slowly and find a section which resonates with you and maybe start there. Remember that small changes can make a huge difference to brain health.

How-To Guide This will help you to navigate the site.

Our Stories. Sometimes reading the stories of others helps us realize that we are not alone and can be a source of inspiration.

One quick tip, if you are responding to someone, it is helpful to use the quote button in the upper right corner by your username. This will also trigger an email that a response to the post has been submitted.

I'm so glad you have joined us on this site. Please feel free to reach out anytime if you need support or have any questions.

I wish you all the best.

Sarah

Thanks for the warm welcome Sarah. I read the primer, but I think that I knew most of it anyway apart from the technical details about APOE4 which I glossed over. Interestingly, NAC is also being trialed in progressive MS, and most people with MS take high dose vitamin D3. There is a lot of overlap it appears. I will drop my story in the appropriate section later.

Stephen.

[TheresaB]

Unfortunately I have one copy of APOE4 and multiple sclerosis (MS), so two potentially dementing things.

Are you familiar with Dr Terry Wahls, herself a MS patient. Her MS had progressed such that she had to be in a tilt recline wheelchair. She was a traditional doctor, but traditional medicine failed to help her. She deeply researched and reversed her condition with diet and other strategies very much aligned to what is often recommended for APOE4s. She is now a functional medicine doctor who has helped countless people with various conditions, not just MS. She was interviewed in one of our podcasts:

The ApoE4.Info Podcast: Episode 1

Terry Wahls, MD: Heal Neurodegeneration w/ Paleo Principles
Dr. Terry Wahls joins Julie Gregory to share her personal story of triumph over secondary progressive multiple sclerosis using a diet and lifestyle regimen guided by paleo principles. She discusses the overlap between multiple sclerosis and ApoE4 and shares specific strategies that can help ApoE4 carriers mitigate their risk of neurodegenerative disease. Additionally, Dr. Wahls shares her latest research, how her protocol has changed, and provides an overview of her new book, The Revised, Expanded Wahls Protocol: A Radical New Way to Treat All Autoimmune Conditions, available now.

Also, while MS is a neurodegenerative disease, my understanding is APOE4 is connected more with synucleinopathies (Lewy Body and Parkinsons's) than demyelination diseases (MS) and I too vaguely remember reading about MS being somewhat protective of AD, but can't find that reference.

[serankin]

Unfortunately I have one copy of APOE4 and multiple sclerosis (MS), so two potentially dementing things.

Are you familiar with Dr Terry Wahls, herself a MS patient. Her MS had progressed such that she had to be in a tilt recline wheelchair. She was a traditional doctor, but traditional medicine failed to help her. She deeply researched and reversed her condition with diet and other strategies very much aligned to what is often recommended for APOE4s. She is now a functional medicine doctor who has helped countless people with various conditions, not just MS. She was interviewed in one of our podcasts:

The ApoE4.Info Podcast: Episode 1

I don't subscribe to the thing that diet can cure all. Once you have brain damage, nothing is going to fix it. The brain unfortunately doesn't heal much, what you see in recovery is the brain adaptation working around the damage. It is called cognitive reserve and once it has gone it is a slow decline in function that can't be reversed. Sorry to be a bit of a downer on it, but that's the reality. You only have one brain, protect it now as much as you can.

Stephen.

Terry Wahls, MD: Heal Neurodegeneration w/ Paleo Principles
Dr. Terry Wahls joins Julie Gregory to share her personal story of triumph over secondary progressive multiple sclerosis using a diet and lifestyle regimen guided by paleo principles. She discusses the overlap between multiple sclerosis and ApoE4 and shares specific strategies that can help ApoE4 carriers mitigate their risk of neurodegenerative disease. Additionally, Dr. Wahls shares her latest research, how her protocol has changed, and provides an overview of her new book, The Revised, Expanded Wahls Protocol: A Radical New Way to Treat All Autoimmune Conditions, available now.

Also, while MS is a neurodegenerative disease, my understanding is APOE4 is connected more with synucleinopathies (Lewy Body and Parkinsons's) than demyelination diseases (MS) and I too vaguely remember reading about MS being somewhat protective of AD, but can't find that reference.

[TheresaB]

I don't subscribe to the thing that diet can cure all. Once you have brain damage, nothing is going to fix it. The brain unfortunately doesn't heal much, what you see in recovery is the brain adaptation working around the damage. It is called cognitive reserve and once it has gone it is a slow decline in function that can't be reversed. Sorry to be a bit of a downer on it, but that's the reality. You only have one brain, protect it now as much as you can.

I don't believe diet can cure all either, afterall I did say "diet and lifestyle regimen". But diet can help significantlyand there are papers to support that, see the Importance of Diet and Lifestyle subsection in the wiki discussion [/b] Introduction to APOE4[/b].

There is such a thing as neuroplasticity, "the brain's capacity to continue growing and evolving" which can be aided by nutrition, sxercise, sleep, stress, stimulation, detox, and supplements. Dr Bredesen has reversed cognitive decline, so I prefer not to be a downer and take control of what I can.

Best to you in your health journey.

[NF52]

Unfortunately I have one copy of APOE4 and multiple sclerosis (MS), so two potentially dementing things.

Are you familiar with Dr Terry Wahls, herself a MS patient. Her MS had progressed such that she had to be in a tilt recline wheelchair. She was a traditional doctor, but traditional medicine failed to help her. She deeply researched and reversed her condition with diet and other strategies very much aligned to what is often recommended for APOE4s. She is now a functional medicine doctor who has helped countless people with various conditions, not just MS. She was interviewed in one of our podcasts:
The ApoE4.Info Podcast: Episode 1 ...

I don't subscribe to the thing that diet can cure all. Once you have brain damage, nothing is going to fix it. The brain unfortunately doesn't heal much, what you see in recovery is the brain adaptation working around the damage. It is called cognitive reserve and once it has gone it is a slow decline in function that can't be reversed. Sorry to be a bit of a downer on it, but that's the reality. You only have one brain, protect it now as much as you can.

Stephen.

Hi Stephen,

Thank you for posting about having MS and one copy of ApoE 4. Your personal experience is valuable to those of us who only know of MS second-hand. I worked with a wonderful woman whose husband lived with MS from his early 30's, and valued his ability to inspire his four sons, to work as a bank executive and to hold his own with my husband when discussing the best Westerns of all time.

In July, I heard researchers at the Alzheimer's Association International Conference talk about the need to have research in inflammatory and neuronal diseases look at just these kinds of questions. My lay person take-away was that newer and faster methods of deep data dives looking at genetic info, biomarkers in blood, CSF and PET scans, MRIs and cognitive and daily living assessments (all made possible by study participants with MS and/or AD) will accelerate the understanding of how to treat, delay, diagnose and prevent many cases of both MS and AD. It's important in science and elsewhere for people to realize that being in a "silo" can prevent the realization that the solution to a problem may be right in the next "silo."

Here's a 2020 study from the Journal of Multiple Sclerosis and Related Disorders by Macomb, et al using a long-term project at the University of Buffalo, NY. It finds an association that is strong, but not quite statistically significant--possibly because the numbers of participants was in the dozens, not in the hundreds. I hope this long-term project leads to more findings that can help you and those who live with MS, whether relapsing-remitting MS (RR-MS) or progressive-MS (P-MS). Note: The link at the end is to the abstract; the text is from the open pre-print manuscript which is available through the same link.

Introduction
This research focuses on the nexus of associations between MS neurodegeneration, serum neurofilament light chains (sNfL) and changes in serum cholesterol pathway biomarkers (CPB). sNfL are a highly specific biomarker for neuronal cell damage that can distinguish MS patients from healthy controls.... sNfL is a predictor of brain atrophy and disease worsening on the Expanded Disability Status Scale (EDSS)...

Clinical Study Setting and Design
This study included samples and clinical data from a single-center, longitudinal, prospective study of clinical, genetic and environmental risk factors in MS at the MS Center of the State University of New York at Buffalo. The study includes patients with MS, clinically isolated syndrome (CIS), healthy controls (HC) and controls with other neurological diseases (OND).
Patients and controls provided blood samples, underwent neurological examination, and responded to a structured questionnaire that was administered in-person at baseline and at the 5-year follow-up visit.We investigated whether sNfL levels were associated with APOE4 haplotype, which promotes amyloid pathology and is associated with increased risk of late-onset non-familial Alzheimer’s disease. ...All analyses of baseline and follow-up samples were conducted in a blinded and paired fashion to minimize variability.

Discussion
APOE4 positivity (rp = 0.23, p = 0.022) was associated with sNfL [serum neurofilament light protein] levels at follow-up.... [We] found that the APOE4 allele was associated with increased sNfL levels particularly in P-MS patients. The exact reasons for this association are not known.....The strength of our study is the availability of MRI, CPB and sNfL at baseline and 5-year follow- up. Nonetheless, we acknowledge that our study design would be strengthened if additional MRI, CPB and sNfL data were acquired at additional intermediate time points and the sample size, particularly of P-MS patients were greater.

Apolipoproteins AI and E are associated with neuroaxonal injury to gray matter in multiple sclerosis

Your cognitive reserve is, I believe, impressive. I hope you find that changes in function can be at least somewhat counter-balanced by advances in tech and other workarounds and what friends of mine with MCI and mild AD advise: "Keep moving and keep finding people and activities that make you happy."

Nancy

[NF52]

Unfortunately I have one copy of APOE4 and multiple sclerosis (MS), so two potentially dementing things. Although, recently there was a post on the Bart's MS blog about how neurologist don't see MS and Alzheimer's together and are theorising that MS is somehow protective against Alzheimer's. Anyway, Alpha lipoic acid is currently being trialed in MS to reduce brain atrophy in secondary progressive MS. A small study found it reduces the rate of brain atrophy by 60% which effectively normalised it as everyone's brain shrinks as they age. It has also been trialed in a small study with Alzheimer's as was found to slow cognitive decline. I take it in the hope that it is preventative in Alzheimer's as well as helping my MS. Unfortunately, I already suffer from cognitive problems due to the MS.

Stephen,

I just came across this August 13 news: FDA Approves Subcutaneous Formulation of Ocrelizumab for Relapsing and Progressive Multiple Sclerosis

The FDA has approved a new subcutaneous formulation of ocrelizumab (Ocrevus; Roche), a humanized monoclonal antibody designed to target CD20-positive B cells, as a treatment for relapsing forms of multiple sclerosis (MS) and primary progressive MS (PPMS), its original indication. Marketed as Zunovo, this expands on the administration options of ocrelizumab, which was originally approved in 2017 as an infusion.

The belief is that a subcutaneous administration of ocrelizumab will provide greater treatment flexibility and additional treatment options for patients and healthcare providers. This was the second approval for subcutaneous ocrelizumab, following the European Commission’s decision to do so in early July. According to the company, the belief is that the first time treatment with the new version could be as little as 55 minutes. Patients looking to go on the this subcutaneous formulation will need to take premedications at least 30 minutes prior to each dose. After the first dose, patients will be monitored by their healthcare provider for at least 60 minutes, with a 15-minute monitoring period following subsequent injections.

Interestingly, the FDA seems likely to also approve a subcutaneous injection for the anti-amyloid drug Leqembi (lecanemab) for people with MCI or Mild AD who have elevated amyloid. My understanding is that after the prescribing doctor is sure the person is able to safely self-administer (or have another person administer) the injection, an auto-injector could be delivered to their homes. Likes self-injecting insulin, having control of this at home makes life that much easier and the process much less time-intensive and costly. Hope this might be an option for you.

Nancy