Actually repairing damage

[bluejadedwho]

I’ve tried many things over the years and it seems like a lot of the studies talk about halting disease progression. Is there any talk about actually fixing the damage already done?

[Hidden]

Good question! I am far more interested in fixing the nerve damage than stopping it. At 60 yo, i would benefit more if i could get 15-20 more years with better functionality, even if the disease were to slowly take that away again.

[fightald in reply to Hidden]

There is a lot of research being done. Just think of all the people across the spectrum of people affected by neuropathic diseases that would benefit, from ALD to Alzheimers. Hope to see it in my lifetime.

[monkeybus in reply to fightald]

Yes, the big numbers are folks with multiple sclerosis and diabetes.

Frankly, AMN isn't on the radar but we can piggyback on any research.

[monkeybus]

I believe it is possible to repair the damage. The human body had a fantastic ability to repair itself.

I started keeping a list of substances that aid remyelination. I believe I posted about it here.

Clemastine Fumarate for remyelination, available OTC.

In Phase II Clinical Trial, Over-the-Counter Antihistamine Significantly Accelerated Nerve-Cell Signaling that had been Slowed by MS

ucsf.edu/news/2017/10/40864...

CDP-choline for remyelination, again, OTC.

pubmed.ncbi.nlm.nih.gov/255...

Late administration of high-frequency electrical stimulation increases nerve regeneration

Tens units are cheap, and well worth a try for any kind of pain, and also (it says here) for nerve regeneration.

pubmed.ncbi.nlm.nih.gov/299...

[bluejadedwho in reply to monkeybus]

I was looking over old posts. I’ve recently learned that actually when it’s in the nervous system and not the brain specifically the myopathy in the spine that we experience, is not demyelination, it’s called dismeyelination, which starts from birth.

[monkeybus in reply to bluejadedwho]

That is another new word on me.

radiopaedia.org/articles/dy...

[bluejadedwho in reply to monkeybus]

Thank you for this link. It however makes things even more confusing! I had never heard of this term until a month ago, when I saw a new neurologist, who although had not seen anyone with AMN, nor had any useful new treatment options, was able to explain the disease process, specifically to what is going on in my body (my phenotype). Apparently, from birth our myelin is formed incorrectly, thus "dismyelination". And as VLCFAs build up and are not metabolized, this can contribute to this more, and then further to this, axons are breaking down. So there is a distinct difference from what is happening in diseases like MS with demyelination, and AMN. Also, that what is happening, if one does not have cerebral disease is metabolic and characterized by the above, however if it becomes cerebral, it is an immune response (like in MS), and then this is where demyelination happens in the brain.

I also learned, that I do not have the full AMN, as seems to be common; many have only two of the components. I have the A (adrenal dysfunction) the M (myelo - or myelopathy which is anything to do with the spine, and and MRI shows thinning of my thoracic spine), however a recent EMG test showed that the nerve function in my legs is completely normal; therefore, I do not have the N (neuropathy). I have AM.

What a strange poorly understood disease!

[COwithAMN Administrator AMN EASIER Volunteer]

I have had a Google Alert running for many years for "myelin repair". It's one way to keep abreast of these developments.

[mariagno]

It will all depend on the damage and where. it is. Brain damage repair will not happen in our life times The blood brain barrier will make this really hard. Spinal cord damage is pretty tough but is really well funded and being worked on for many causes and at many places.. Peripheral nerve damage is getting better every year. Diabetic research is deep into this and so are other diseases.

I have peripheral damage as 99% of my issues.

[nikolahn]

My - MRT confirmed - brain damage I have fixed with Cerluten. I have suffered tongue biting too. I suppose one of the brain damage simptoms. Cerluten fixed it too.

I am suffering neuropathy.

[bluejadedwho in reply to nikolahn]

I have just being talking about this with someone. I would love some more details! And that is amazing!!! I am thinking about it is preventative to try and avoid cerebral involvement.

[nikolahn in reply to bluejadedwho]

Cerluten is repairing! It contains peptides extracted from livestock brains.

peptidesstore.com/pages/cli...