Rant: How can there be no medical practice to help us?

General Discussion
#1

Even the most deadly and rare diseases are recognized & have some sort of treatment.

The most deadly cancers have countless treatment methods. Even terminal cancers have options to alleviate symptoms.

How can our cases really be faced with absolutely nothing?? What is so special about our condition that traditional medicine work cannot understand anything??

How can everything look more or less normal in endless labworks, but inside our body isn’t working correctly.

Even deadly rare genetic diseases like ALS aren’t like this. At least there’s an understanding behind what’s happening to the body.

This disease is like being medicinally in 1920, while living in 2020.

What is so damn hard to understand about hormones and their interactions with receptors, and gene methylation, etc? Everything is there. In countless studies and textbooks?

Couldn’t potentially a genetics expert or an endocrinology expert look at us, and at least UNDERSTAND wtf is happening? I’m not talking about a cure. Just to even understand the problem?

What could be so specific and mystic about our condition than the thousands of other hormonal, immune, neurological, genetic conditions documented and thoroughly understood?!

6 Likes
#2

Because our condition is caused by prescription drugs, and the medical community wants to continue prescribing drugs. It’s easier for them to afford their yacht if they deny the existence of PFS.

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#3

Because our condition is caused by prescription drugs, and the medical community wants to continue prescribing drugs. It’s easier for them to afford their yacht if they deny the existence of PFS.

100 %

1 Like
#4

Because nobody knows what causes this, because nobody speaks up, because most people don’t end up here.

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#5

People do speak up, but they get shot down by doctors who cast doubt on their condition.
wrassman on reddit claimed that he has never seen PFS with his patients, but then it was revealed that he was getting sued by one of his patients for PFS.

At the end of the day, most doctors only care about money. If lying makes them money, then they will lie regardless of their hippocratic oath.

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#7

I think I didn’t explain it very well.

All the other medical problems that are out there, you can find people who are prepared to stand up and say what happened to them.

With this, not so much.

The evidence is mounting, more doctors are acknowledging the condition. But fundamentally, this is something which is both rare and only spoken about in the corners of the Internet.

6 Likes
#8

Yeah, that’s true. I think a lot of people are embarrassed that their condition is self-inflicted for some vain reason. It took a lot for me to admit to my family and friends what I’m going through.

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#9

I think so.

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#10

The fact that I can’t convince anyone that I developed my ailments from finasteride or Accutane doesn’t help. Not having a diagnosis is hurting our community. The fact our labs look good means the current medical model is a joke and is outdated.

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#11

What you said man!
This was the expression on my face when the brainfog kicked in…

image

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#12

I feel like if these online clinics keep doling this stuff out there will be alot more if us soon and they can’t ignore us then

#13

Yes and no.

I think you’re right that the numbers will go up. They will be able to ignore us as long as we sit and wait to be noticed. We need to take control of our own future, not wait to be granted it by someone else.

1 Like