Demyelinating Disease

I recently have been diagnosed with Demyelinating Disease ( MS or Parkinson's) , have another Neurologist appt at the VA next month for more testing to narrow down the exact diagnosis and treatment


I'm losing sensation and noticing muscle wasting and tremors on my l/side and now forced to use a Walker/Rollator to get around and I'm easily tired out after PT were I'm trying to regain muscle tone

I believe this is a result of using dry cleaning Solvents in the Military such Aircraft cleaning solvent (TCE or PCE) while I was active duty in the early 80's

Anyone on here dealing with this disease??

 

Damn I thought you'd be bouncing back after that knee replacement.

 

I worked at ECBC at APG in MD and interfaced a lot of medical research staff that worked on CBRNE-related issues. I’ll try to think of who would be good to send an email to with some questions.

 

My r/knee replacement has healed nicely but the Demyelinating disease has really hit me hard over the past several months . The Doctors are shocked on how much it is advanced

 

How are the meds treating you? I've heard mixed results sometimes

 

I went to Armorers school at APG from 1981-82

 

I'm just using Advil for pain control on my knee but no meds as of yet for Neurological disorder

 

Awesome. I used to park next to the big field with the Blackhawks. They just built a huge and massively expensive research hospital right there. I was working on IED and bio detection back when that was a big problem in Iraq. I have seen some very cool and intereting stuff there like the new super suit but I was there as a chemist and never got to mess with the fun stuff.

 

Well that's tough, but I'm sure the docs know what they're doing. I'll check in on ya tomorrow, get some sleep for now bud. Staying up isn't going to help

 

This is interesting:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5259863/

My thought process was that myelin is ~75% lipid so if I was demyelinating I would want more lipids around to hopefully drive the reaction the other way— which is used sometimes for certain neurodegenerative disorders. So I googled ‘demyelination fish oil’ and that paper was the first hit.

 

It probably isn't very obvious, the most interesting part of that paper is:

Conclusions
These results indicate that n-3 PUFAs might have a role in promotion of remyelination after toxic injury to CNS oligodendrocytes.

This is saying 'fish oil' [1] looks like it helps remylenation when the mylenating cells of the central nervous system are damaged, which may be what the root problem is. If I were you I'd print this paper and ask your doctor about it if they have not already discussed PUFAs with you.

[1] Fish oil is Omega-3 polyunsaturated fatty acids (PUFAs) included α-linolenic acid (ALA; 18:3 ω-3), stearidonic acid (SDA; 18:4 ω-3), eicosapentaenoic acid (EPA; 20:5 ω-3), docosapentaenoic acid (DPA; 22:5 ω-3), and docosahexaenoic acid (DHA; 22:6 ω-3).

 

just checking in on ya, how's physical therapy going

 

The PT I'm doing at home plus the Supervised PT at a facility is going well