4 ms·

As somebody who has a somewhat strange form of Multiple Sclerosis wherein almost all of the damage is in my so-called "water channel" nerves located in my optic

As somebody who has a somewhat strange form of Multiple Sclerosis wherein almost all of the damage is in my so-called "water channel" nerves located in my optic nerves and around my brain stem, the observation that pathogens get "swept" into the area of my CNS where most of my lesions occur is very interesting. I've been tested multiple times for neuromyelitis optica, but that's come back negative each time, so it's still officially diagnosed as MS. It's just that my white matter has been completely untouched for the 23 years I've had symptoms, which is really unusual. Interferon beta worked really well for me, and now Ocrelizumab is doing even better. I'm convinced that what we call "Multiple Sclerosis" today is actually a collection of distinct conditions with largely orthogonal causes, and just about the best we can do in absence of a more thorough understanding of the issues is nuke all the adolescent B-lymphocytes (which is what Ocrelizumab does).

therein 5y ago
Here is an interesting fact for anyone who might be reading. All the medications with the -mab suffix are monoclonal antibodies. For instance the "monoclonal antibody cocktail" Trump received was casirivimab and imdevimab, made by Regeneron.
- steelframe 5y ago
  Another fun fact: BioNTech, the company that co-developed the mRNA COVID vaccine, applied similar techniques to develop an experimental MS vaccine. https://theweek.com/speedreads/960371/vaccine-maker-biontech-reports-potential-multiple-sclerosis-breakthrough https://theweek.com/speedreads/960371/vaccine-maker-biontech... Of course if I could have a Bitcoin for every time "autoimmune encephalomyelitis" has been cured in a mouse model I would be set for life!
faeyanpiraat 5y ago
Do you happen to know an online MS community with folks similar to the HN crowd?
- treeman79 5y ago
  Reddit and Facebook tend to have good communities.
rusty-rust 5y ago
When last did you perform the tests for NMO? In the last decade quite a few new tests have been developed. There are two antibody tests you can perform to determine if you have NMOSD; Anti-Mog and Aquaporin-4
- steelframe 5y ago
  My last test for NMO was a little over a year ago. It was definitively negative. I'm responding really well to Ocrelizumab, which my neurologist tells me would probably be what he would treat me with for NMO too, so it's sort of a moot point for me whether it's MS or NMO. Treatment is the same, outcomes are the same.
treeman79 5y ago
Ever been tested for Sjogrens? An autoimmune disorder that attacks fluid producing systems.
- steelframe 5y ago
  > Ever been tested for Sjogrens? I'll look into it. Although the nerve damage is in the CNS and not peripheral, and I don't have any issues with dry eyes and mouth. Fifteen MRIs and 5 different neurologists have all pegged it as MS.
  - treeman79 5y ago
    How on earth do people get this level of nerve testing. I have severe neuropathy, I have never even had any test on them done.
    - failwhaleshark 5y ago
      Anyone know if sleep deprivation from sleep apnea causes global, temporary loss of sensation or (permanent) neuropathy? I lost a large fraction of sensation everywhere. I'm tired af, don't sleep very well or very long, and feel like s#!7. (Been tested for lupus like 10x.)
      - treeman79 5y ago
        Sleep apnea causes a lot of exhaustion and stress. Really hard on body. Getting a cpap was a massive improvement for to my life. 10 years later I was still declining hard. Got diagnosed with Sjogrens, a cousin to lupus.
        failwhaleshark 5y ago
        Ouch. That's no good but glad they narrowed it down. I've always had read areas under my eyes and dry eyes, and now dry skin on my forehead and around my mouth. Back to OSA: I have tachycardia and hypertension controlled by a beta blocker (propranolol er). Also, depression, ADHD, and (physiological) anxiety. Can't and could never run a mile to save my life. Haha. Could/can do explosive intensity exercises but never anything more than very low intensity like walking or bicycling. I wondering if I have pulmonary and/or circulation issues on top/because of OSA that limit moderate aerobic exercise capacity. (Heart is unremarkable per 12-lead ECG, stress echo, and catheterization at Stanford Cardiology a few years ago.. actually performs very efficiently under load.)
chy3dz 5y ago
Multiple sclerosis? More like multiple prognosis am I right!?.. Sorry about your condition

therein 5y ago

Here is an interesting fact for anyone who might be reading. All the medications with the -mab suffix are monoclonal antibodies. For instance the "monoclonal antibody cocktail" Trump received was casirivimab and imdevimab, made by Regeneron.

steelframe 5y ago
Another fun fact: BioNTech, the company that co-developed the mRNA COVID vaccine, applied similar techniques to develop an experimental MS vaccine. https://theweek.com/speedreads/960371/vaccine-maker-biontech-reports-potential-multiple-sclerosis-breakthrough https://theweek.com/speedreads/960371/vaccine-maker-biontech... Of course if I could have a Bitcoin for every time "autoimmune encephalomyelitis" has been cured in a mouse model I would be set for life!

faeyanpiraat 5y ago

Do you happen to know an online MS community with folks similar to the HN crowd?

treeman79 5y ago
Reddit and Facebook tend to have good communities.

rusty-rust 5y ago

When last did you perform the tests for NMO? In the last decade quite a few new tests have been developed. There are two antibody tests you can perform to determine if you have NMOSD; Anti-Mog and Aquaporin-4

steelframe 5y ago
My last test for NMO was a little over a year ago. It was definitively negative. I'm responding really well to Ocrelizumab, which my neurologist tells me would probably be what he would treat me with for NMO too, so it's sort of a moot point for me whether it's MS or NMO. Treatment is the same, outcomes are the same.

treeman79 5y ago

Ever been tested for Sjogrens? An autoimmune disorder that attacks fluid producing systems.

steelframe 5y ago
> Ever been tested for Sjogrens? I'll look into it. Although the nerve damage is in the CNS and not peripheral, and I don't have any issues with dry eyes and mouth. Fifteen MRIs and 5 different neurologists have all pegged it as MS.
- treeman79 5y ago
  How on earth do people get this level of nerve testing. I have severe neuropathy, I have never even had any test on them done.
  - failwhaleshark 5y ago
    Anyone know if sleep deprivation from sleep apnea causes global, temporary loss of sensation or (permanent) neuropathy? I lost a large fraction of sensation everywhere. I'm tired af, don't sleep very well or very long, and feel like s#!7. (Been tested for lupus like 10x.)
    - treeman79 5y ago
      Sleep apnea causes a lot of exhaustion and stress. Really hard on body. Getting a cpap was a massive improvement for to my life. 10 years later I was still declining hard. Got diagnosed with Sjogrens, a cousin to lupus.
      - failwhaleshark 5y ago
        Ouch. That's no good but glad they narrowed it down. I've always had read areas under my eyes and dry eyes, and now dry skin on my forehead and around my mouth. Back to OSA: I have tachycardia and hypertension controlled by a beta blocker (propranolol er). Also, depression, ADHD, and (physiological) anxiety. Can't and could never run a mile to save my life. Haha. Could/can do explosive intensity exercises but never anything more than very low intensity like walking or bicycling. I wondering if I have pulmonary and/or circulation issues on top/because of OSA that limit moderate aerobic exercise capacity. (Heart is unremarkable per 12-lead ECG, stress echo, and catheterization at Stanford Cardiology a few years ago.. actually performs very efficiently under load.)

chy3dz 5y ago

Multiple sclerosis? More like multiple prognosis am I right!?.. Sorry about your condition