.......thank you for this video! I'm currently 49 - and was diagnosed at the age of 44. On a Tuesday morning, I couldn't go to work - I was physically too fatigued to. I went to the ER and found out that my kidney's were only functioning at 12%. I stayed in the hospital for a few weeks and had a biopsy of my kidneys and was found to have had Wegener's (I still call it that). I'm currently on Cyclophosphamide and Prednisone and a couple of other medications. I've had a lot of hospital stays, recently, due to increased potassium and other factors. I think, for me, one of the worst feelings isn't so much the side effects as it is feeling super depressed about my medical situation, compounding work stress, and just general stress. I am seeking treatment, but it just feels like a constant onslaught of bad news. I guess it's pointless to wish that this NEVER happened to me - it doesn't change anything. I just hate this illness and all it's done to me!
All of us with this condition have different symptoms. Hence the doctors can't find what's going on. We've all got to die some day. My view: Keep on for as long as we can, and tell the Grim Reaper to Foxtrot Oscar.
Have you looked into the AIP diet or Carnivore? There seems to be a lot of people who do these very strict who get symptom relief from auto immune issues. I'm here just investigating, I have thyroid auto immune already, but an ENT Dr wants me to test for other auto immune due to some nose inflammation that won't go away.
I am so very sorry to hear about how you feel. I’m not sure I can convey this through a message, but there is so much hope! We have so many options nowadays. Please reach out to your rheumatologist and share your fears and frustrations. That’s our role: to help you and reassure you. Rooting for you
This video was amazing and so helpful. I am 41 and 17 months ago I went from 183 to 147 in 4 months while eating normally. I then started with so many symptoms ...Arms and legs go numb all the time, veins swell, hand grip is weak, fatigue is overwhelming, horrible stomach pains, dry eyes & noses, eyes are bloodshot sometimes, constant throbbing behind my ear where mastoid area is, swollen lymph nodes, blood and protein in urine, left kidney bleeding which I found out after ureteroscopy after urinating dark red blood for 3 months, calcified granulomas in the lungs, multiple cysts in the breast (Bi Rads 3), blurry vision with stars and spots, ringing of ears often, terrible joint and bone pain, muscle aches, and the right side of my cheek/eye area is protruding like I have been punched. I also get petechiae like rash after hot showers and have had tons of spots from a rash that I thought was ringworm from my children who were in daycare at the time (never saw a dr about it) my husband never caught it and we always wondered why I had about 21 lesions and he never caught this contagious rash. Now I am thinking it was an auto immune rash. Can you comment on any insight you may have to help me? My Rheumatologist suspected this but says my Anca test was negative and Pr3 and something else but I have every symptom of this. I have been sick for almost 2 years now and my appearance has changed horribly, and I feel like I am literally falling apart. They wont biopsy my kidney but yet have no answers, I keep getting pushed off from dr to dr and they all tell me they dont know whats wrong with me.
Hi and thank you for your kind feedback and comment. I do not give medical advices on this UA-cam channel. You need to talk with your rheumatologist and I would be happy to see you and discuss more with you if you are in Colorado, MN, WI or Mi. You can contact us at info@unabridgedmd.com if you are interested. Best
I've got it myself. Hard to diagnose because EVERY patient presents different symptoms/signs. Also, the term "Wegeners" is disused these days because it's named after a doctor who did nasty things in death camps.
@@Rheumatology101 NO PROBLEM! Don't rename it for this reason! My specialists here in the UK had read about this condition. They were excited to get me as a patient because they'd never met someone with Wegeners in their long careers. Under control now, but my symptoms are COMPLETELY different from those described.
Oh my God. I'm really greatfull that I've found You. More then a year I feel really bad, just like a flu or a bigger cold. I have high temperature, night sweat, chills, joints pains, double vision, blur vision, headaches. My reumatologists said there is nothing wrong with me cos I dont have antibodies ANCA. I had a HRCT of my lungs two weeks ago and I've got lumps, scars and milky glass (I dont know how you call it in English) I feel anybody understands me, how terrible I feel.
@@Rheumatology101 tkank You for your care. I really dont think reumatologist will help me as I was trying searching for help a year and a half and they did nothing. Also recommended to see psychiatrist... But thanks God I ended in pulmunology clinic and they said I'm going to have a controlling HRCT in few weeks and then they will do the biopsy. What excacly I've got in my lungs due to last scan: confluent patchy parenchymal densities, small nodular lesions, fibrosis, ground glass lesions.
Thank you very much.Results of an Ultrasound of the lump thats been growing in my cheek 7 months, suggest Vasculitis.I have suffered from all of the symptoms except for the rash for over 2 yr.s.Diagnised with Lyme last Summer & EBV in Jan.Cat scan in March Showed Nothing & I was told it eas an abscess last Oct.,& A muscle or lympnode by the Oral Surgeon in Feb.It us very scary that Dr s would be so aloof about all my presenting symptoms.Going back to My Rheumatologist ( I have (RA) for bloodwork & urinalysis as my PCP had to google " Vasculitis" at my appointment this Mon.
Hello Ma'm... I am a patient of ANCA GPA. Can I reach out to you personally for your guidance. Although every rheumatologist knows about this disease but there are very few who have got practical experiences of treatment as there are very few. patients.
These are not medical advices. I’d be happy to help you if you can come to Colorado. You can also look at the vasculitis foundation for a registry with specialists in vasculitis.
@@Rheumatology101 Thanks Ma'm for your response. But I am located in Kolkata, India. I can take suggestions from you online but unfortunately I wont be able to afford to travel that far. Is there any way I can reach out to you online over a Teams/Whatsapp call?
Very informational and Please kindy make also for negative anca associated vasculitis
Silent viewer here and God bless
.......thank you for this video!
I'm currently 49 - and was diagnosed at the age of 44. On a Tuesday morning, I couldn't go to work - I was physically too fatigued to. I went to the ER and found out that my kidney's were only functioning at 12%. I stayed in the hospital for a few weeks and had a biopsy of my kidneys and was found to have had Wegener's (I still call it that).
I'm currently on Cyclophosphamide and Prednisone and a couple of other medications. I've had a lot of hospital stays, recently, due to increased potassium and other factors.
I think, for me, one of the worst feelings isn't so much the side effects as it is feeling super depressed about my medical situation, compounding work stress, and just general stress. I am seeking treatment, but it just feels like a constant onslaught of bad news.
I guess it's pointless to wish that this NEVER happened to me - it doesn't change anything. I just hate this illness and all it's done to me!
All of us with this condition have different symptoms. Hence the doctors can't find what's going on.
We've all got to die some day. My view: Keep on for as long as we can, and tell the Grim Reaper to Foxtrot Oscar.
Have you looked into the AIP diet or Carnivore? There seems to be a lot of people who do these very strict who get symptom relief from auto immune issues. I'm here just investigating, I have thyroid auto immune already, but an ENT Dr wants me to test for other auto immune due to some nose inflammation that won't go away.
I am so very sorry to hear about how you feel.
I’m not sure I can convey this through a message, but there is so much hope! We have so many options nowadays. Please reach out to your rheumatologist and share your fears and frustrations. That’s our role: to help you and reassure you.
Rooting for you
This video was amazing and so helpful. I am 41 and 17 months ago I went from 183 to 147 in 4 months while eating normally. I then started with so many symptoms ...Arms and legs go numb all the time, veins swell, hand grip is weak, fatigue is overwhelming, horrible stomach pains, dry eyes & noses, eyes are bloodshot sometimes, constant throbbing behind my ear where mastoid area is, swollen lymph nodes, blood and protein in urine, left kidney bleeding which I found out after ureteroscopy after urinating dark red blood for 3 months, calcified granulomas in the lungs, multiple cysts in the breast (Bi Rads 3), blurry vision with stars and spots, ringing of ears often, terrible joint and bone pain, muscle aches, and the right side of my cheek/eye area is protruding like I have been punched. I also get petechiae like rash after hot showers and have had tons of spots from a rash that I thought was ringworm from my children who were in daycare at the time (never saw a dr about it) my husband never caught it and we always wondered why I had about 21 lesions and he never caught this contagious rash. Now I am thinking it was an auto immune rash. Can you comment on any insight you may have to help me? My Rheumatologist suspected this but says my Anca test was negative and Pr3 and something else but I have every symptom of this. I have been sick for almost 2 years now and my appearance has changed horribly, and I feel like I am literally falling apart. They wont biopsy my kidney but yet have no answers, I keep getting pushed off from dr to dr and they all tell me they dont know whats wrong with me.
Hi and thank you for your kind feedback and comment. I do not give medical advices on this UA-cam channel. You need to talk with your rheumatologist and I would be happy to see you and discuss more with you if you are in Colorado, MN, WI or Mi.
You can contact us at info@unabridgedmd.com if you are interested. Best
I've got it myself. Hard to diagnose because EVERY patient presents different symptoms/signs.
Also, the term "Wegeners" is disused these days because it's named after a doctor who did nasty things in death camps.
It is true but we all are so used to that term. I’ll try to be better. Thank you :)
@@Rheumatology101 NO PROBLEM! Don't rename it for this reason!
My specialists here in the UK had read about this condition. They were excited to get me as a patient because they'd never met someone with Wegeners in their long careers.
Under control now, but my symptoms are COMPLETELY different from those described.
Oh my God. I'm really greatfull that I've found You. More then a year I feel really bad, just like a flu or a bigger cold. I have high temperature, night sweat, chills, joints pains, double vision, blur vision, headaches. My reumatologists said there is nothing wrong with me cos I dont have antibodies ANCA.
I had a HRCT of my lungs two weeks ago and I've got lumps, scars and milky glass (I dont know how you call it in English)
I feel anybody understands me, how terrible I feel.
I’m sure your rheumatologist can help! This seems pretty typical and we have excellent treatments! Keep us posted. Rooting for you!
@@Rheumatology101 tkank You for your care.
I really dont think reumatologist will help me as I was trying searching for help a year and a half and they did nothing. Also recommended to see psychiatrist...
But thanks God I ended in pulmunology clinic and they said I'm going to have a controlling HRCT in few weeks and then they will do the biopsy.
What excacly I've got in my lungs due to last scan: confluent patchy parenchymal densities, small nodular lesions, fibrosis, ground glass lesions.
Really useful video. I would be grateful for a video on MPA
Thank you very much.Results of an Ultrasound of the lump thats been growing in my cheek 7 months, suggest Vasculitis.I have suffered from all of the symptoms except for the rash for over 2 yr.s.Diagnised with Lyme last Summer & EBV in Jan.Cat scan in March Showed Nothing & I was told it eas an abscess last Oct.,& A muscle or lympnode by the Oral Surgeon in Feb.It us very scary that Dr s would be so aloof about all my presenting symptoms.Going back to My Rheumatologist ( I have (RA) for bloodwork & urinalysis as my PCP had to google " Vasculitis" at my appointment this Mon.
Let us know how you do! Rooting for you
Is it feasible that myocardial ischaemia could be diagnosed in relation to GPA but the individual not put on any specific medication for this?
Hello Ma'm... I am a patient of ANCA GPA. Can I reach out to you personally for your guidance. Although every rheumatologist knows about this disease but there are very few who have got practical experiences of treatment as there are very few. patients.
These are not medical advices. I’d be happy to help you if you can come to Colorado. You can also look at the vasculitis foundation for a registry with specialists in vasculitis.
@@Rheumatology101 Thanks Ma'm for your response. But I am located in Kolkata, India. I can take suggestions from you online but unfortunately I wont be able to afford to travel that far. Is there any way I can reach out to you online over a Teams/Whatsapp call?
Hi I'm 20 years old suffering from vasculitis since 2018, I was 14 at that time
@@ayandutta3207
Hello mam yah dikkat mere bete ko ho gai hai please iska Koi solution batana vah abhi sirf 11 Sal Ka Hai please aap se request hai
AP kaha se ho?
Hello mam