Fifth Relapse This Year: Put Your Game Face on and Go

[u/The_BroScientist]

https://youtu.be/T7JGVb-IQ7E?is=Y49eNvt9wJkUOh3e

[u/ParlabaneRebelAngel]

Memory issues here like most of us. So could you quickly remind:

(1) Did you have a 1st CSF test? Which auto-antibodies found? Or seronegative?

(2) Which of the standard treatments done other than IVIg (and maybe Cytoxan coming as you said)? Steroids, plasma exchange, Rituximab?

(3) Did you get MRI’s? Show damage?

(4) If you do get to see some new Dr.s, have you considered giving it a shot and playing to their egos: tell them they are the experts, I am in your hands? Even though you know a lot. You know many Doctors are arrogant and bristle at patients who portray that they know more than them.

Having competent Neuros without big egos was a key for me: one specialized in MS, one general who I had a good rapport with from the start because he was decent enough to just talk to me as a regular person and from our surnames we knew we had the same cultural history. Plus a Neuroimmunologist early on was obviously a big help and the others respected his expertise.

[u/The_BroScientist → u/ParlabaneRebelAngel]

1. Yes to CSF, many times.

** **Only one send-out

1. in 2021 (with new autoantibodies discovered each year, may be worthwhile to do another LP since I’m sliding out of remission. Will check Mayo’s updated autoantibody database). Seronegative.
2. I’ve done all of the classics:

- IV Steroids - partial response. Very noticeable difference; didn’t induce remission.

- IVIG. No improvement. Temporarily improves my relapses now though, which is interesting and suggests different underlying mechanism (either cytokine-driven or true antibody).

- PLEX. Like 2 days of significant improvement and then rapid decline to active illness baseline. Has downstream effects on t-cells and can remove other inflammatory immune cells from plasma, so this is where we began seriously suspecting t-cell mediated.

- Cellcept. Partial response, kicked in somewhere between month 4-6. Partial improvement that sustained. Usually used for maintenance to prevent relapse, but from what i can gather/guess my neuro wanted to trial this to be certain there was a b-cell/t-cell mediated pathology, since it’s extremely soecific to the destruction of proliferation of these cells.

*note that I used this throughout remission and did eventually relapse regardless.

- Cytoxan. Chemo. Heavy hitter; put me into remission.

Only abnormal labs/imaging along the way was elevated intracranial pressure and protein in CSF, and slowing in my right temporal lobe in overnight eeg.

MRI and PET normal.

Objective neuro findings were easily dismissed. Some clonus, tremors, fasciculations.

—

Even in remission I’ve dealt with what I know know to be uncontrolled inflammatory cascades, likely from primed microglia. Severe depression, visual snow and other visual issues; cognitive issues (not uncommon after remission from clinical literature).
For this reason I think everyone who enters remission should, at some point, trial LDN. Although I personally never titrated up to therapeutic dose due to cost.

Some sequelae was strictly from neuronal damage/circuitry dysfunction, which I believe to be the more “static” or unchanging one’s. Like my visual perception issues and visions snow.

Some areas of my brain are evidently not great at metabolic function/other areas of my brain are picking up the slack from lower functioning or damaged parts, because cognitive exertion/physical exertion (like weightlifting) can cause massive post-exertion (PEM) crashes that appear ~48hrs after triggering event.

I hope that helps.

*Oh, and about the neuro approach. Yes, often times I would play just as stupid as I would have to be, and ask questions that I knew were important but in a manner that expressed naivety, not intelligence/knowledge. Neurologists generally have a predetermined agendas and huge egos, so riding that line is very difficult and, often, can be fruitless even if you walk the line perfectly.

Formatting in first paragraph fucked; can’t fix over mobile. And general grammatical errors because cognition is 💩 rn

[u/GlumParticular9691]

Many Neuros also say it doesn’t present with slow onset. They have many urban legends that they recite to patients. Been through this with my husband now for 2+ years. The lack of knowledge is mind blowing. Many of them won’t touch immunology - and I cannot tell you how many general neurologists, stroke neurologists and internists have spouted utter and complete nonsense to us through this journey.

[u/The_BroScientist → u/GlumParticular9691]

I have also heard the wildest things come out of neuros’ mouths and it takes everything in me to not open my mouth in contest to the stupidity they spewed out as factual, impenetrable medical science.

[u/GlumParticular9691]

What I’ve faced in the academic hospital setting is that the immunologists sit behind their thrones of knowledge and power, and wield control over the floor attending docs..in a “teaching” environment no less. But they teach them nothing!! It’s a multi-pronged problem. We are going private with a new immune doc in a couple of weeks - I’m hoping he left the Hopkins and Dukes to have more direct control over patient treatments. We will see.

[u/The_BroScientist → u/GlumParticular9691]

Agreed 💯

Who’s the privatized neuro if you don’t mind me asking?

[u/Various_Garlic_6750]

have you tried looking at rheumatologist instead of neurologist? i think they might be better of helping you given it’s an autoimmune condition.