Feelings vs data.

[I_am_not_mafia]

Came back from the neurologist's today. He was comparing the brain scan I had after my first attack over a year ago with another brain scan I had last month. There are two new lesions on my brain despite me making really strict lifestyle changes (no meat, no dairy, no cooked oils, whole foods, making sure I get enough exposure to sunlight etc). I sort of expected but I still hoped there would be nothing new.

He's recommending that I start on disease modifying drugs. Trouble is that drugs have side effects and I don't know how they will affect me. I will probably be on them for life.


Secondly, I feel fine (except for the odd cold patch on my leg). I think I lapsed when I made a mistake and ate some cafe-bought soup with milk in it by accident without checking the ingredients. I also had a very stressful spring (moving house, writing a paper etc). Otherwise I feel that I have a good chance of reducing progression with lifestyle changes alone. But it's risky.

Problem is that once lesions on the brain form, they don't go away again. Eventually more of them just appear until one day you get one that permanently. robs you of something. Like for example I will never get full sensation back in my fingers after my main attack last year despite everything else coming back to me.

So I have a decision to make. Do I go by how I feel? Or do I go with evidence obtained by impartial experts with experience in these situations?

I'm going with the latter because I only have one life. I don't want to waste it and I want to live to my fullest potential rather than be robbed of my potential, whether it's by an auto-immune disease or a behaviour altering meme parasite.

My feelings are missing critical information.

[chimp3]

You sound very rational. I would make a similar choice by relying on experts for advice.

[Fireball]

This truly sucks. I'm with the Chimp- data is always better.

[Anomalocaris]

Came back from the neurologist's today. He was comparing the brain scan I had after my first attack over a year ago with another brain scan I had last month. There are two new lesions on my brain despite me making really strict lifestyle changes (no meat, no dairy, no cooked oils, whole foods, making sure I get enough exposure to sunlight etc). I sort of expected but I still hoped there would be nothing new.

He's recommending that I start on disease modifying drugs. Trouble is that drugs have side effects and I don't know how they will affect me. I will probably be on them for life.


Secondly, I feel fine (except for the odd cold patch on my leg). I think I lapsed when I made a mistake and ate some cafe-bought soup with milk in it by accident without checking the ingredients. I also had a very stressful spring (moving house, writing a paper etc). Otherwise I feel that I have a good chance of reducing progression with lifestyle changes alone. But it's risky.

Problem is that once lesions on the brain form, they don't go away again. Eventually more of them just appear until one day you get one that permanently. robs you of something.  Like for example I will never get full sensation back in my fingers after my main attack last year despite everything else coming back to me.

So I have a decision to make. Do I go by how I feel? Or do I go with evidence obtained by impartial experts with experience in these situations?

I'm going with the latter because I only have one life. I don't want to waste it and I want to live to my fullest potential rather than be robbed of my potential, whether it's by an auto-immune disease or a behaviour altering meme parasite.

My feelings are missing critical information.

Well, my question is how much of what the impartial experts you consult say is based on their own feelings rather than evidence?
Here because overlooking the relevant personal and cognitive foibles of a particular expert could have graver consequences than a few more days of fever, I think It would not hurt to check up on exactly what the professional literature has to say and what data underpins these literature and compare that to what the experts say during consultation with you.

[LadyForCamus]

So sorry you got not so great news on your latest scans, Mathilda. You are doing everything in your power to alter the disease progression though, and that’s awesome. I wish you the best possible outcome in all of this. One day after the next, right? ❤️

[Angrboda]

Is there any reason to choose one over the other? Why not both?

[chimp3]

I would like to add this, if my condition was a manageable chronic condition that I had a good chance of a decently long life I would side with the experts. If I were to be told that I had six months to live if I followed the experts advice vs. three months if I lived like Keith Richards..... "I was born in a crossfire hurricane...."

[Silver]

My concern is that the "eating healthier" spiel seems to be more of a silly holistic approach than a medical one, especially in relation to lesions on the brain.

Being concerned over consuming a minute amount of regular milk just doesn't seem rational, as though that minor slip will cause a big ole' mean lesion to appear.

As Jor has already brought up, there should be no discrepancy between living one's life to its fullest and following realistic medical advice. I very much doubt that avoiding certain things in relation to brain lesions is realistic. I simply do not see a connection between the consumption of certain foods to that type of medical condition. Something definitely seems off.

[Angrboda]

My concern is that the "eating healthier" spiel seems to be more of a silly holistic approach than a medical one, especially in relation to lesions on the brain.

Being concerned over consuming a minute amount of regular milk just doesn't seem rational, as though that minor slip will cause a big ole' mean lesion to appear.

"What if we've been eating healthily all this time for nothing?!?"

[Silver]

"What if we've been eating healthily all this time for nothing?!?"

Healthy food has its benefits, certainly. I am simply not buying the connection to eating normally, rather than obsessively healthily, leading to a drastic negative change in brain chemistry, any more than I absolutely believe eating as though one lives in a health food store necessarily makes one healthier than those who eat normally. I honestly believe there is a big hubaloo in regards to what people consume. After all, it's not what one consumes so much as it is an individual's unique DNA and how it reacts to the world.