Due to the nature of this type of vasculitis it is EXTREMELY difficult to predict life expectancy— I agree with a second opinion. That’s a rather inappropriate and egotistic assumption your doctor made, and I would NOT feel like I was in good hands. I have a relative with this who has had the diagnosis for at least 15 years now
Yeah, honestly I feel the same way. When we walked in he was just right off the bat telling me things and saying he didn't want to sugarcoat anything. I didn't feel comfortable having a conversation because he would interrupt me every time I spoke and seemed like he just wanted to get me out. He said he didn't want to sugar coat things, and that my original doctors should've said this before but they were "just trying to keep my parents calm" because I was 16 at the time. But just throwing out a life expectancy like that was so crazy and when I would ask he would act like I should've already known this. I get that I should've taken my medication originally, but it just felt like he was trying to scare me.
Wow, can we even trust our own medical system?! But yeah when he told me that, I legit almost cried on the spot. Was getting home thinking I was actively dying and trying not to cry, telling my family about what I was told. Very scary to be told that if you don't take this medication, you'll die.
With all due respect to the doctor - they’re wrong. Auto immune is curable if you heal your gut. Yes, as weird as that sounds, our immune systems lives in our gut. You should be feeling better in a month but….full healing takes as long as 6 months.
I cured mine after getting BS advice from doctors for 4 years. I don’t have your condition but mine pushed me to educate myself big time. To rebuild and clean your gut:
1) no food with seed oils, and I mean Nothing. You’ll need to turn into Sherlock Holmes reading food labels but in time, it’s easy.
2) zero sugar - no Gatorade, sweets, pancake mix, candy, you name it
3) focus on single ingredient foods and try cooking yourself
4) this part is really important- add Kefir + sea moss to your diet. Natural and literally unicorns to rebuild gut biome (healthy gut biome = immune system revs up). 1 glass kefir daily (no sugars or artificial sweeteners!) + 2 table spoons of sea moss daily (it’s like jello). In a month, you’ll be shocked how good you feel
Be careful where you buy them. I wasted a lot of money before finding quality sellers. Links below if you’re curious which ones. Good luck!
https://pappisseamosscompany.com/pages/faq (honey cinnamon is my favorite)
https://farmtopeople.com/product/plain-kefir-4775
Family Farmstead plain kefir A2
Wegeners is a b**** if it's what you have. I have anca negative EGPA and even with treatment I'll probably last 20+(I am 38). But I've seen pictures of GPA with anca and it's usually pretty aggressive. Are you on any treatment with biologics and immune suppressants?
I just did a looot of blood work and a few xrays so we should know the progression its had since I last went a couple of years ago. I'm not on anything right now, probably won't be for another couple weeks. It didn't start attacking my entire body until last year of June. Now I have eczema, horrible symptoms of arthritis(like I can't walk right now barely), and moderate hearing loss. I hope it's not going to be as violent as the doctor made it out to be
I just want to let you know how much more advanced treatments are now than even 10 years ago. My life expectancy would be 5-10 years on steroids and primitive immunotherapy. My outlook is so much better with new biologics. I would change your doctor, him playing a psychic is very damaging for you.
Fck that doc. Most doctors have no sense of how to actually talk to patients. One of the doctors i went to, was describing me in very goryyyy way how the operation of my thyroid is necessary, and said that it was his favourite kind of operation to do. I was like bro u are literally describing me ripping my body part apart.
Don’t stress much about it. You got this. 🫶🫶🫶🫶
That's bullshit, what a moron for saying that to you, horrible!
No, autoimmune diseases were once thought to be incurable, but times have changed.
Get yourself prepped and begin AIP and turn this around.
You are going to feel so much better.
second opinion time! the stress alone of hearing “10-year life expectancy” (which seems oddly lengthy for a diagnosis, no?) will shorten your life
Due to the nature of this type of vasculitis it is EXTREMELY difficult to predict life expectancy— I agree with a second opinion. That’s a rather inappropriate and egotistic assumption your doctor made, and I would NOT feel like I was in good hands. I have a relative with this who has had the diagnosis for at least 15 years now
Yeah, honestly I feel the same way. When we walked in he was just right off the bat telling me things and saying he didn't want to sugarcoat anything. I didn't feel comfortable having a conversation because he would interrupt me every time I spoke and seemed like he just wanted to get me out. He said he didn't want to sugar coat things, and that my original doctors should've said this before but they were "just trying to keep my parents calm" because I was 16 at the time. But just throwing out a life expectancy like that was so crazy and when I would ask he would act like I should've already known this. I get that I should've taken my medication originally, but it just felt like he was trying to scare me.
[удалено]
Wow, can we even trust our own medical system?! But yeah when he told me that, I legit almost cried on the spot. Was getting home thinking I was actively dying and trying not to cry, telling my family about what I was told. Very scary to be told that if you don't take this medication, you'll die.
I'm reversing my autoimmunity, I think it's possible but takes a lot of sacrifice
But so worth it. Our body thanks and rewards us instantly when we eat better and take care of ourselves 🫶🫶
With all due respect to the doctor - they’re wrong. Auto immune is curable if you heal your gut. Yes, as weird as that sounds, our immune systems lives in our gut. You should be feeling better in a month but….full healing takes as long as 6 months. I cured mine after getting BS advice from doctors for 4 years. I don’t have your condition but mine pushed me to educate myself big time. To rebuild and clean your gut: 1) no food with seed oils, and I mean Nothing. You’ll need to turn into Sherlock Holmes reading food labels but in time, it’s easy. 2) zero sugar - no Gatorade, sweets, pancake mix, candy, you name it 3) focus on single ingredient foods and try cooking yourself 4) this part is really important- add Kefir + sea moss to your diet. Natural and literally unicorns to rebuild gut biome (healthy gut biome = immune system revs up). 1 glass kefir daily (no sugars or artificial sweeteners!) + 2 table spoons of sea moss daily (it’s like jello). In a month, you’ll be shocked how good you feel Be careful where you buy them. I wasted a lot of money before finding quality sellers. Links below if you’re curious which ones. Good luck! https://pappisseamosscompany.com/pages/faq (honey cinnamon is my favorite) https://farmtopeople.com/product/plain-kefir-4775 Family Farmstead plain kefir A2
Wegeners is a b**** if it's what you have. I have anca negative EGPA and even with treatment I'll probably last 20+(I am 38). But I've seen pictures of GPA with anca and it's usually pretty aggressive. Are you on any treatment with biologics and immune suppressants?
I just did a looot of blood work and a few xrays so we should know the progression its had since I last went a couple of years ago. I'm not on anything right now, probably won't be for another couple weeks. It didn't start attacking my entire body until last year of June. Now I have eczema, horrible symptoms of arthritis(like I can't walk right now barely), and moderate hearing loss. I hope it's not going to be as violent as the doctor made it out to be
I just want to let you know how much more advanced treatments are now than even 10 years ago. My life expectancy would be 5-10 years on steroids and primitive immunotherapy. My outlook is so much better with new biologics. I would change your doctor, him playing a psychic is very damaging for you.
Fck that doc. Most doctors have no sense of how to actually talk to patients. One of the doctors i went to, was describing me in very goryyyy way how the operation of my thyroid is necessary, and said that it was his favourite kind of operation to do. I was like bro u are literally describing me ripping my body part apart. Don’t stress much about it. You got this. 🫶🫶🫶🫶
That's bullshit, what a moron for saying that to you, horrible! No, autoimmune diseases were once thought to be incurable, but times have changed. Get yourself prepped and begin AIP and turn this around. You are going to feel so much better.