How Noah came up with the idea to do a study about the complement system and MS looking lesions —

I think I’ve mentioned this before, but it’s always **bugged** Noah tremendously when I tell people I have MS. I explained to Noah why I do it, because it simplifies that I have a very serious medical disorder, saying ‘I have MS’ usually shuts people up really quickly and ends any further discussion.

“Strange weird immune deficiency that hasn’t exactly been figured out”, people tend to read as a fancy way of saying I’m a hypochondriac.

I don’t usually talk this way to medical people of course…unless I really don’t think they’re going to be any help and I never plan to see the doctor again anyway,

but in general day to day interactions when I’m in situations where I need to ‘justify’ my medical existence,

my MS diagnosis usually does the trick.

Tonight as I was tucking Noah into bed, (after a night of the Big Short and the power of studying economics and he was an MD),

“But it bugs me because you don’t have it.”

“Well, I agree Noah, but you have to understand some very intelligent doctors — even the head of the MS clinic at Cedars — are pretty convinced that actually, indeed, I do have MS.”

Noah sat up in bed crossing his arms in mild frustration.

“Did you explain your history? Did you talk about your lack of MS symptoms, and your history of atypical immunodeficiency problems?”

“Yes Noah, I did, but she’s still pretty convinced. And a few other neurologists too. But as I’m sitting here talking with you about it and not taking any MS medications, clearly I’m pretty convinced I don’t have it either.”

Noah thinks about this for a second.

“But this is what’s important to take away from this situation Noah — this doctor at Cedars is extremely intelligent, she’s an expert in the field — so why would an extremely intelligent and expert in the field be convinced I have MS if actually I don’t have MS? Obviously the answer is something very unusual and rare is going on. Extraordinarily unusual.”

Noah chewed on this…

“Like in the fall of 2005 Noah, when I first got really sick, I didn’t have my previous medical records with me, and unlike the way I’m preparing you for life, no one prepared me and I was in total denial about myself. So here I was, deathly ill, so why were so many intelligent doctors missing it? You have to understand, most doctors want to fix you if they can — they want to give you a recipe or a recommendation or a pill to make it better — it makes their life easier too because then you’re not complaining anymore. So as much as I wanted to write off a lot of doctors as just being assholes, I knew in my heart they weren’t…so if I knew I was telling the truth, and I accepted they would give me the solution if they could, but they weren’t, then clearly the answer was something outside of the ordinary. So that led me down on the path to getting my old medical records, to track down my biological father for family medical history, etc.”

Hmmmm…

“So this neurologist is extremely intelligent?”

“Extremely.“

“And she’s absolutely convinced you have MS?”

“She’s absolutely convinced.”

“And your MRI lesions look like MS lesions?”

“I’ve never seen the MRI myself, but from what I’ve been told, yes.”

Noah’s mind starts racing…

“Then the answer is clearly in an area of the body that hasn’t been considered yet. What else could cause the myleth sheeth to behave like that when it isn’t autoimmune related. Some people are born with a lower level of sheeth then normal, some people have thinner sheeth than normal people, and literally these people think slower than a normal person.”

Then Noah started to explain to me lesions in the brain and how neurotransmissions work, some of it I already knew but some of it I didn’t.

“Do they know which part of the brain you have lesions?”

I think so? But I don’t know where they are. That frustrated Noah ‘how can you not know?’ 🤪

So after giving me an introductory lesson on brain lesions,

Noah paused for a second…

“The complement system mom. I want to study the complement system and it’s impact on brain lesions.”

Wow.

I just looked at Noah and said, I have no idea what’s already been done about that, but in 15 years I’ve had these lesions no one has ever once asked me or talked to me about a possible connection.

Dr. Schroeder once speculated I could have been born with these lesions, but other than that I’ve never heard any other explanation than MS. It’s hard to remember now, but I got my first brain MRI because I paid cash for it, not because it was clinically indicated (a point Noah found particularly interesting “did you tell the neurologist that?”).

So….

this is the story of how Noah came up with his experiment idea if he gets to go to a university that allows undergrads to do an experiment ❤️— Noah’s personal annoyance over hearing me tell people I have MS, lol

“Stop saying that to people! YOU DON’T HAVE MS MOM!”

Then what do I have, my dearest Noah?

I guess he wants to find out 😍👍 ️

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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