Health Struggles

[Dillon]

I just got to love being gaslit by my doctors trying to determine what’s going on with me. For the past 5-6 months I’ve had a small lump on my neck and I wanted someone to check it out. I went to the ER last week because I was losing vision in my right eye (still blurry at the moment) and I had a CT scan done with blood work with the doctor saying “everything is normal”

I then had a follow up appointment with dermotology and I had described my symptoms of joint/muscle pain, fatigue, weight loss, and recurring scalp psoriasis with hair loss. I had blood work done in which I had a positive anti-nuclear antibody (indicates my own immune system is attacking my body) at a level of 1:230 but a negative anti-smith antibody test which indicated I did not have Lupus but even then I am told again “everything is normal”. My primary care doctor same thing again “everything looks normal on your blood work” except my ferritin was low and it’s been critically low since 2017 in the single digits.

My ophthalmologist diagnosed me with hypertensive retinopathy but doctor will not do anything about it since it’s in a mild state and medication will only be provided until further progression of the disease is noted. I am suspected for glaucoma which I do not buy at all.

Has anyone been through something like this when you know you have symptoms for a long time but no one will bother listen to you or dig deeper for a diagnoses? It is quite frustrating especially with how young I am I should t be going through this.

 

[stevens]

It is not as serious or as troubling as your case, but I do have a story of the lack of medical problem solving. I have what is known as a Type II, non-IgE-mediated hypersensitivity to dairy protein. This manifests as an eczema-like skin rash approximately 24-36 hours after I ingest more than about 2 grams of dairy protein. It is proportional to the dose. It affects the skin only (mainly my hands unless the amount consumed goes up), which means I do not get a reaction internally by ingesting it--only on the skin.

All my life I have had episodes of "eczema" i.e., non-specific dermatitis for which I've received a variety of speculations/diagnoses/treatments all of which were incorrectly focused. The sensitivity I have is not rare in adults, and very common in children, most of whom outgrow dairy sensitivities--but no one talks about it.

How did I diagnose it? Greek Yogurt became popular. I really liked it, so I started eating it regularly for breakfast, with fruit. My dairy protein intake went from sporadic and typically about 1-2 grams with sporadic excesses a day to over 10 grams per day on a regular basis. I looked like I was sunburned everywhere. I had dry, flaking skin and horrible cracking in my hands. I saw several doctors, including one who prescribed fluconazole even though I tested negative for fungal cultures. No one guessed the cause. And then, one week for some reason, I was eating a lot more yogurt. This pushed my protein up so far that the symptoms got really worse. I began to wonder if the dairy had anything to do with this. So I quit dairy altogether. In three weeks, the symptoms had all vanished. Thereafter I tried consuming 5-10 grams of dairy protein once in awhile at one time, and then as if by magic, in two days I would have red skin and the skin on my hands would be cracking. The correlation with the dairy intake was 100%.

Later I told a dermatologist my story and he said, "Of course." Then again he's the same guy who never had a clue why I had all those skin problems before. This finally explained problems that had been present for decades, almost 60 years after they first appeared. Now I just keep my dairy protein intake below 2 grams a day, and whatever reaction there is remains so minor as not to be an annoyance. I do miss pigging out on cheese though.

This story shows how doctors don't do troubleshooting anymore. You can't, if you spend 15 minutes with a patient once every six months. My story isn't life threatening, but the lessons from it easily could extend into cases that are.

 

[Tom]

Sounds like what occurs often in medicine. That is difficulty figuring out what is wrong. Being told everything normal usually only means everything they just tested for is within normal not that nothing is wrong at all. Doctors frequently use a form of float chart, ie for this symtom check this. It's all based on corporate medical knowledge and works quite a bit of the time, but not all the time. But I wouldn't call it gaslighting which is purposely giving misinformation for some malovent purpose. It's more to do with judgement call and them having to deal with hundreds or even thousands of patients one after another in an endless train. The standard approach to questioning a doctor is getting a second opinion with a new doctor.

 

[Aspychata]

Maybe gaslighting in the sense that Americsn doctors will run every test possible to raise your bill. in law offices, it's call padding the bill. I worked in one such law office.

 

[Neonatal RRT]

Most MDs are trained to treat lab results. In the US, insurance companies force MDs to treat lab results. They will not reimburse for treating symptoms. If you need a specialist, plan on 6 months to a year before an appointment. The "system" leaves a lot to be desired.

Here is a bit of information: There is little correlation between symptoms and lab results. People can be in rough shape and still have normal lab results. Just depends upon what you are measuring. Most MDs do not measure markers of inflammation, but they really should be.

Personally, my doctor is at one of those anti-aging clinics (PhysioAge), does hormone therapies, etc. He doesn't take insurance and therefore isn't beholden to them. He got out of his internal medicine practice being dissatisfied with all the insurance company micromanagement, denials, prior approval forms, and lack of reimbursement.

Labs are a lot less expensive paying for cash than with my insurance co-pays. Who knew, but like 1/2 the cost. No exaggeration. He treats symptoms. Prior to every visit, I fill out one of his symptom questionnaires, and we go from there. He monitors all my lipid profiles, markers of inflammation, hormone levels, physicals, vitals, everything. Very thorough. Been pretty happy over the past 15 years.

 

[Aspychata]

Great info @Neonatal RRT. Thank you. @Dillon, your struggle is real right now, you have to find the doctor that is experienced enough to diagnose you. Yup, that's what it comes down to. Sometimes an older doctor who has seen a lot of patients and has experience treating a multitude of issues is your only chance of success.

 

[Mary Terry]

It is not as serious or as troubling as your case, but I do have a story of the lack of medical problem solving. I have what is known as a Type II, non-IgE-mediated hypersensitivity to dairy protein. This manifests as an eczema-like skin rash approximately 24-36 hours after I ingest more than about 2 grams of dairy protein. It is proportional to the dose. It affects the skin only (mainly my hands unless the amount consumed goes up), which means I do not get a reaction internally by ingesting it--only on the skin.

All my life I have had episodes of "eczema" i.e., non-specific dermatitis for which I've received a variety of speculations/diagnoses/treatments all of which were incorrectly focused. The sensitivity I have is not rare in adults, and very common in children, most of whom outgrow dairy sensitivities--but no one talks about it.

How did I diagnose it? Greek Yogurt became popular. I really liked it, so I started eating it regularly for breakfast, with fruit. My dairy protein intake went from sporadic and typically about 1-2 grams with sporadic excesses a day to over 10 grams per day on a regular basis. I looked like I was sunburned everywhere. I had dry, flaking skin and horrible cracking in my hands. I saw several doctors, including one who prescribed fluconazole even though I tested negative for fungal cultures. No one guessed the cause. And then, one week for some reason, I was eating a lot more yogurt. This pushed my protein up so far that the symptoms got really worse. I began to wonder if the dairy had anything to do with this. So I quit dairy altogether. In three weeks, the symptoms had all vanished. Thereafter I tried consuming 5-10 grams of dairy protein once in awhile at one time, and then as if by magic, in two days I would have red skin and the skin on my hands would be cracking. The correlation with the dairy intake was 100%.

Later I told a dermatologist my story and he said, "Of course." Then again he's the same guy who never had a clue why I had all those skin problems before. This finally explained problems that had been present for decades, almost 60 years after they first appeared. Now I just keep my dairy protein intake below 2 grams a day, and whatever reaction there is remains so minor as not to be an annoyance. I do miss pigging out on cheese though.

This story shows how doctors don't do troubleshooting anymore. You can't, if you spend 15 minutes with a patient once every six months. My story isn't life threatening, but the lessons from it easily could extend into cases that are.

I sometimes get eczema on my legs and arms. If it's really bad, I get it on my torso, too.
The dermatologist said she doesn't know the cause but mentioned that children often outgrow childhood allergies. I was allergic to eggs and shellfish as a kid.

Long story short, I stopped eating eggs, and the eczema went away. I still eat a little egg, such as in a cake or cookie or when I bread something like fried green tomatoes, but no longer eat them for breakfast like I used to. I miss having scrambled eggs, fried eggs, and shakshuka for breakfast but they play havoc with my skin.

The last time I had a problem with shellfish was when I ate a stone crab in an Asian restaurant and broke out with huge hives all over my body before I even finished eating it. Shrimp and lobster don't seem to affect me anymore.

 

[stevens]

I sometimes get eczema on my legs and arms. If it's really bad, I get it on my torso, too.
The dermatologist said she doesn't know the cause but mentioned that children often outgrow childhood allergies. I was allergic to eggs and shellfish as a kid.

Long story short, I stopped eating eggs, and the eczema went away. I still eat a little egg, such as in a cake or cookie or when I bread something like fried green tomatoes, but no longer eat them for breakfast like I used to. I miss having scrambled eggs, fried eggs, and shakshuka for breakfast but they play havoc with my skin.

The last time I had a problem with shellfish was when I ate a stone crab in an Asian restaurant and broke out with huge hives all over my body before I even finished eating it. Shrimp and lobster don't seem to affect me anymore.

I wonder if you're as thrilled with this discovery as I was. It was so frustrating to have hands that opened up and cracked at the joints, and patches of dry flaky skin. Once I knew the cause, it gave me a sense of control that I could turn it off, just by avoiding too much of the triggering substance. Everyone wants to give you steroid creams and symptomatic treatments, when finding the cause and correcting it is so simple and effective.

 

[Mary Terry]

I wonder if you're as thrilled with this discovery as I was. It was so frustrating to have hands that opened up and cracked at the joints, and patches of dry flaky skin. Once I knew the cause, it gave me a sense of control that I could turn it off, just by avoiding too much of the triggering substance. Everyone wants to give you steroid creams and symptomatic treatments, when finding the cause and correcting it is so simple and effective.

I agree with you. I'd much rather avoid an allergen than to treat it with drugs. But it's hard to figure out if it's a food causing the problem, and which food it is. I started with eliminating eggs because of my childhood allergy, and luckily, it turned out that eggs are the problem.

My brother and I are allergic to peanuts and hops. We joke that no one will ever see us sitting in a bar drinking beer and eating bar nuts because we'd have pneumonia the next day from our allergic reaction.

 

[tree]

https://www.parents.com/teal-pumpkins-on-halloween-8717433?utm_source=pocket-newtab-en-us

“The Teal Pumpkin Project is an amazing initiative that will make Halloween more inclusive for children affected by food allergies and dietary restrictions,” says Harpreet Pall, MD, the academic chair and professor in the Department of Pediatrics at Hackensack Meridian School of Medicine. “Non-food treats are safe alternatives that children can enjoy without feeling left out, so the Teal Pumpkin Project ensures a fun, memorable, and inclusive Halloween experience.”

Spoiler

Teal Pumpkin Project

 

[Levitat0r]

I just got to love being gaslit by my doctors trying to determine what’s going on with me. For the past 5-6 months I’ve had a small lump on my neck and I wanted someone to check it out. I went to the ER last week because I was losing vision in my right eye (still blurry at the moment) and I had a CT scan done with blood work with the doctor saying “everything is normal”

I then had a follow up appointment with dermotology and I had described my symptoms of joint/muscle pain, fatigue, weight loss, and recurring scalp psoriasis with hair loss. I had blood work done in which I had a positive anti-nuclear antibody (indicates my own immune system is attacking my body) at a level of 1:230 but a negative anti-smith antibody test which indicated I did not have Lupus but even then I am told again “everything is normal”. My primary care doctor same thing again “everything looks normal on your blood work” except my ferritin was low and it’s been critically low since 2017 in the single digits.

My ophthalmologist diagnosed me with hypertensive retinopathy but doctor will not do anything about it since it’s in a mild state and medication will only be provided until further progression of the disease is noted. I am suspected for glaucoma which I do not buy at all.

Has anyone been through something like this when you know you have symptoms for a long time but no one will bother listen to you or dig deeper for a diagnoses? It is quite frustrating especially with how young I am I should t be going through this.

It's a story as old as the medical profession. The patient who heals miraculously from the impossible, and the patient who can't get help for an actual problem. I healed "spontaneously" from a diagnosis calling for bilateral jaw reconstruction to the tune of over ten thousand dollars, and I attribute that, specifically, to prayer. I was also misdiagnosed with things much worse than autism for reasons I won't go into..There's a long history of the abuse of psychiatry to oppress people...It's a nasty world, even when the problem is just apathy, and as someone who is seen as cognitively different, you can get lots of apathy. But it's better than active malice.

 

[Ronald Zeeman]

Just walked three km for 3 straight days still recovering from my stroke 4.5 years ago where I lost the ability to walk second time in my life, continuous improvement. Now 4 days recovering after only one days rest could not do this even a week ago. Almost 70 years old still recovering Stunned. Dancing again with my wife here I come.

 

[Mary Terry]

I got my blood work results from my cardiologist yesterday. My LDL is below 60! The doctor emailed me about the excellent result. My BMI is 22 which is good. I told him that it is my diet (I think). I limit the amount of animal fat I eat, and I walk and garden for exercise. I eat a lot of fresh vegetables and fruit, but I need to increase the amount of whole grains I consume. My blood pressure is trending high, so he put me on a low dose BP medication, and I'm going to cut out even more salt from my diet. A friend recommended a product called "Mrs. Dash" as a salt substitute. I often use fresh lemon juice as a salt substitute.

I hate getting old.

 

[Ronald Zeeman]

Doctor put me on cholesterol drug after stoke I have no issue with cholesterol I'm pissed why am I taking this drug most likely doing damage. measure blood pressure daily biggest issue is low when I sweat too much when walking.
I like the taste of KCl( mR. Dash) better than NACl.

 

[Mary Terry]

Doctor put me on cholesterol drug after stoke I have no issue with cholesterol I'm pissed why am I taking this drug most likely doing damage. measure blood pressure daily biggest issue is low when I sweat too much when walking.
I like the taste of KCl( mR. Dash) better than NACl.

Your doctor may have prescribed a statin drug as a preventative measure for plaque buildup in your arteries, even though you don't have high cholesterol. I think statins are hard on the liver. Hope you're taking a low dose, like 10 mg per day.

 

[Ronald Zeeman]

My doctor assumed, my stoke was caused by cholesterol my old doctor told me it was because some of the other drugs I was taking may cause an issue, My urologist took me off the other drugs as the reason I was taking them was moronic. My current doctor apologized to me for his initial statement I do not put up with fools. Time to change doctors again.

 

[Ronald Zeeman]

Every profession has a distribution of skills among it's practitioners, and not all are equally bright due to my presentation I come across as not too bright, boy do they find out that's not the case. I'm not anyone's fool. Sort of like that detective Columbo