Why does it take so long to get an autoimmune diagnosis?!?
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- Опубликовано: 11 сен 2024
- When you don't feel well - and haven't felt well for a long time - and your doctor dismisses you, telling you your symptoms are in your head, that nothing is wrong, or that nothing can be done, it is frustrating!! Unfortunately, this is the case with most people that get diagnosed with an autoimmune disease.
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As a man I'm sitting here in tears you're the first person to understand what I've been going through. I've seen over 15 doctors and 7 specialists I've been hospitalized twice due to infection and had two surgeries. I've been given medication for HIV to stage one cancer. Been depressed to the point of self deletion. And recently had a flare up so bad i lost everything. My job, car, and home but thanks to your methods I'm finally feeling better. Don't know if you'll see this I just want to say thank you. 💙
Aw, this made my day! I'm so glad that I have been able to help in some small way, and that you are finally feeling better after all of that. Wow. So sorry you've had to go through all of it!
It’s so sad that doctors won’t listen to us when we say something isn’t right. I’m so tired of being put on medications that do nothing for me, or being told that I look fine, or begging to have blood work done and asked why! I want it done because clearly I have to research and figure this out myself…what ever is going on within my body, is reason I’m so depressed now! It’s the reason I haven’t been able to sleep or work! It’s the reason I’m stressed about loosing my home and not being able to support my son and I! Is that not enough?!? I understand why mental illness is such a problem in society today…we are tired of fighting. Ughh! 😭 Thank you for sharing your story as it’s always nice to hear from someone who actually understands and cares. ❤
The problem with waiting so long for a diagnosis is that you actually start to believe that you don't have an autoimmune disease and when you actually get diagnosed it hurts 10 times more.😢
This is exactly what was wrong with me. Doctors wanted to put me on anti-anxiety meds. I refused! Since the doctors couldn't help me, I realized I had to help myself. After lots of research, eliminating stress and doing an anti-inflammatory diet, all of my symptoms went away within a month. I no longer completely trust doctors and I now know I have to be my own advocate. I've tried to help others who I run into that share their similar health issues however it's hard to get people to listen because once I tell them they need to eat healthy they no longer want to listen. They just decide to resort to meds. I guess it takes the curious and skeptical type to look past their doctors advise. I'm not saying that food is the "heal all" answer but so many people don't realize how damaging years of unhealthy eating can be. Sometimes it takes meds but sometimes changing the diet can lessen the need for meds and perhaps eliminate the need.
EXACTLY!! So glad you were able to find results from changing your diet and becoming your own advocate. And you're so right that people don't want to listen - I used to struggle with that with many family members, etc but we can only lead by example. (That's one reason I started a blog and YT channel, lol! Now I talk to the people who WANT to listen, haha)
Ditto. Doctors usually send us to psychologist or tell us to meditate cuz it must be in our heads.
Which I mean, yes, there is a lot in our heads as well, and maybe even the root cause of why we're going through this if trauma or chronic stress is a factor. But skin rashes? Heavy periods? Hair falling out? THAT'S all in our heads? C'mon doc. Something clearly is wrong with our BODIES at that point. It's progressed past our heads even if it DID start there. That's what makes me so frustrated - don't just hand us off if you don't know what to do.
It took me 30 years. I can look back and pinpoint the month I started feeling awful. It was after the birth if my second child.
Oh, let add....they sent me to a psychiatrist. Lol
Wow! I thought my 15 years was bad.
Wow - 30 years is insane! So sorry you had to go through that...
I finally got a diagnosis of Hashimoto after 15 years. Got diagnosed with Graves’ disease, then hypertension. Changed my diet and was fine for 10 years. Then after experiencing extreme stress, symptoms came around again but only worse triggering my blood pressure and getting me to dangerous numbers. So here I am 15 years later with no thyroid meds, extreme brain fog and unable to multitask without experiencing extreme anxiety and getting a rise in blood pressure. I now am trying to adjust my diet again and find the right movement to regulate my system. So frustrated that I’m ready to take focus medication because I can’t take this feeling of chaos and overwhelm anymore! Thank you for sharing your journey. I’m on your list and have been following for a while.
So sorry you're going through all of this! It's got to be extremely frustrating. It really is amazing though how much stress has an effect on all of this. Hope you can get it all figured out and start feeling better soon 💕
I didn't suffer this long until I was diagnosed with Celiac......but by the time I was my intestines were damaged by being on NEXIUM for way too long for GERD. Now I must get iron infusions because I deal with Anemia. Michele's message is SOOOOOOOO important. Research, study, check her information, be good to yourself and be skeptical of Doctor's. There thrust too often is write a prescription for "relief" rather then determine what to change and taking care of that. A perfect example is giving an obese person medicine to reduce their high blood pressure but not telling them to lose weight and get some exercise if physically possible, duh! Thanks Michele for trying to educate. As Dr. Mark Hyman, MD (and Functional Medicine Doctor) mentioned: food can be poison or medicine! Choose wisely.
Love this Neil! So sorry though that you had to go through a similar thing of being harmed by doctor's good intentions. It's so unfortunate!
Michelle’s auto immune collective group helped me so much. You really can’t hurt yourself by changing your diet to eat healthier food. If you’re watching this and feel that sick, just give it a try. I couldn’t have done AIP without Michelle’s group. I was so surprised that even foods I considered healthy gave me a reaction. I would’ve never known if I hadn’t done the elimination diet. Michelle gives you tips on how to cook healthy food when you’re extremely tired. Very grateful for Michelle.
Aw, I'm so glad you feel this way 💕
I feel like this exactly 💯 right now,normal results but I can't get up from bed..
I hope you can feel better soon! 💕
I can relate to this. I've been having autoimmune symptoms since I caught EBV in 2018. Started AIP in 2020 and it helped a TON, but there's more to find as I'm having medical issues still. Where my PCP and GI doctors have been dismissive, I finally saw an FMD this year and got immediate results with my most concerning issue. I don't have an AI diagnosis yet and it makes me sad that I'm a statistic in the neglectful medical system. But I know I have to keep trying.
So glad you keep trying though - and that your FMD helped you get some immediate results after being dismissed. It's SO frustrating!!
Please make a video on what you eat everyday. It give us ideas. I have no clue how to start that😢
I could write a book of my journey from hell through the medical industry from the time I was 17 till after 40. It wasn’t until I finally fired all my doctors, got genetic testing and a fmd that I found out I had celiac disease. Currently waiting on results to see if I also have Hashimoto’s. I started getting really bad after the birth of my son even after the gluten free diet change for my celiac disease. My symptoms are getting scary. I’m having blackouts again.
I've talked about my bone-crushing fatigue to providers for 15ish years. Been told repeatedly all my labs are "within normal limits". I developed peripheral neuropathy and bilateral drop foot and started having frequent falls. That got their attention, but it's been around 10 months now of have a test...wait two months. Have an MRI, oh we need a different MRI, wait another month, etc. Finally had an EMG come back abnormal and now I'm being referred to neurology....in 6 weeks. This video also made me cry out of relief that someone really understood how I feel! As a side note, I gave up gluten about a week ago, and this morning I woke up almost pain free from my osteoarthritis for the first time in about 2 months. I believe you when you talk about changing your diet!
You can do it.
Do what?
Feel better mentally and physically.
How?
Change one thing at a time and stay with it.
How long?
Magic wands are in short supply so as long as it takes. Good news is ,the sooner you start the sooner you will feel better.
What if I screw up?
You will be in good company. Falling down happens, get up and be wiser.
Love this!!! ❤️
That's so crazy, my new doctor I just switched to for another opinion, has seen me once so far, did no physical whatsoever, just looked thru the labs he had copies of, then after hearing me try to get everything I could, out within my allotted appointment time, ended the visit with:
"I'm just a doctor, I don't know what's wrong with you. I can't heal you, only Jesus can heal. I'm just here to try and help your overall health"...
Right before he wrote a prescription for anti-anxiety/anti-depressants!
I said: "Wow! Really!?! I feel like im being told I'm crazy! Being 'depressed and anxious' wouldn't cause my ankles to swell. It wouldn't cause blood in my stools or in my urine. It wouldn't cause my back and kidneys to throb so hard sometimes that I physically cannot sleep!"
He said: "no, but I believe if we can get your mental health under control i believe it will make a difference..."
Anxiety and depression are NOT causing ALL these signs and symptoms to keep occurring in me!
These signs and symptoms being brushed off as if "its all in my head" , is CAUSING my anxiety and depression!
I'm SICK! There's SOMETHING wrong with me, and I feel like im gonna die before i even find out what is killing me!
He did end up ordering a ANA panel for me tho, right at the end. But still scheduled my next appointment for 5 weeks later! (Prolly wanted time to see if those antidepressants are gonna magically fix me somehow! NEWSFLASH... IM NOT TAKING THEM!
I need someone to listen and actually CARE enough to put in the time and effort to get to the bottom of this and give me a proper diagnosis and prognosis.
I can't work and I've already lost my apartment, some of my furniture, and some of my boys toys and furniture as we stay in a spare room of an old acquaintance. I cant stand for more than 10- 15 min MAX at a time, I'm exhausted. And even my roommate doesn't seem to believe me, cause I don't LOOK sick, so I'm expected to keep the house pristine and pick up after everyone, keep the floors swept and mopped, take out allnthe trash, keep the dishes from everyone kept washed due and put away, as im being reminded and questioned almost daily about what my plans are for housing and that we can't stay much longer.
My son is 4 years old. I have nobody but God who cares.
Antidepressants... NO, I don't need antidepressants, thank you very much! I need a doctor who cares more about the patient than the paycheck! 🙏
My journey started with labrum tears in my hips. After that I had the beginning of what would become years of hell with my depression and still, it’s not treated, trying pretty much all of the antidepressants out there, doing an ECT, which erased a lot of my memory, having gastroparesis, a tumor in my spine, Blood work that clearly comes back showing there is something wrong with my immune system and having many doctors and specialists say that they are very concerned, but they don’t know what to make of it. Couple doctors telling me that it could be more years of not having an auto immune diagnosis. Meanwhile, I live my life with chronic pain with severe depression with severe anxiety with not having a will to live. and I just don’t know what to do. I am 51 years old and this thought just got stuck into my head. Is this how I’m going to live the rest of my life suffering without knowing why
I just ended up septic after complaining for two months that I was feeling extremely sick. I have PARAthyroid disease, not thyroid that causes kidney stones and I have had to self diagnose, fight with doctors, feel suicidal, even been hospitalized for mental health over my autoimmune issues. I can go years feeling ok and the I’ll get hit so I’m ignored even more. I’ve never been more angry and depressed this time around. I don’t even want to fight anymore. I’m exhausted and overwhelmed
Thank you, thank you, thank you!!!
You are so welcome!
I went to 13 endocrinologists none of the Doctors understand hashimotos disease. All they do is adjust my meds.
This is my story
What’s wrong with corn and dairy?
For me how much money is it going to cost to finally get diagnosised? (doctors send me to other docs)Because my test was negative but I'm still stuck w the symptoms. Had to plead for medication for joint pain.
😂🤣 great attitude
I've got my diagnose in half a year, Psoriasis. But i do not feel better with the medication. I have it in my hands and feet so normal dat to day things hurt always. I am always tyerd. Slowly i am now trying to change to paleo.
One of my best friends just completely cleared up her psoriasis and went off all meds by doing the Autoimmune Protocol (AIP diet). Not saying you have to do that - because many have done just fine with Paleo - but just wanted to mention that as it can be helpful to hear of others that have gotten successful results!
Todos los que padecemos una enfermedad autoinmune debemos tratar nuestra microbiota intestinal.
Si - eso es importante!
@@MicheleSpring gracias Michele por tu respuesta 😀😘
I think an important take away from your story. Is that if you are not getting better within a reasonable amount of time and especially if you’re getting worse to go get yourself a second and even third opinion. Auto immune diseases are notoriously hard to diagnose sometimes even then, then it seems that a lot of doctors don’t know how to treat it appropriately.
Diet makes a HUGE DIFFERENCE and so do lifestyle changes like exercise and lowered stress.
I think the United States is just starting to catch up to the idea of functional medicine as being valid and in many ways much more helpful. Conventional doctors do not seem to respond well to alternative therapies no matter how well they work.
Most doctors are idiots and you are not allowed to say this because they are amazing to people that have never been ill before.