A personal loss motivated Greg Lesko to get involved in educating people about a rare autoimmune disease called vasculitis. He and Dr. Kristi Mizelle, a Rheumatologist, discuss symptoms, causes and treatments.
I am a doctor myself. I am 59 years old and for six years I was consulting leegions of collleeagues about my growing all over body pain,my fatigue which led to the closing of my own cinic, and in the end to insolvenz and from April on I will live on social security with my 21 year oldd son. Between the doctors I consultes there where 3 rheumatologists. I told all of them , that in my family we have a rhemathoid diathesis due to the fact that my gradnparents where cousins. Yesterday, after two mayor bleedings with the need for Blood infusions, the University clinic of Erlangen thanks to a PET- CT diagnosed a big cell artheritis. I still dont know of which kind.But what a relief not to be told to be iundergoing menopause or being depressive. Being a doctor myself I can articulate mysel ok, butI imagine ssomeone in the same situation without explaing symptoms in medical language. 6 lost years of my life, where I was to fatigued to even meet people and doing my household. My yong son cared for me and had enormous problems at school, because he missed classs often, wen I had fallen before being sometimes being unconcious. This years he was excluded from doing the high school eam, before he had too many missed days, despite knowledge of the situation by the local ministry of education and from April on my smal private rent will end. I have no idea whether I ever will be able to work ( currently im too tired to have a diner with friends and I know even less how to help my son, as a lone educating mother with college. If the disease was diagnosed six years ago, when it started, all this would have been avoided. I could have been treated or if this was not possible been able to ask somebody to sell my clinic.If there is a facebook group about Vasculitis, and your organisation, please let me know.
This is a very dangerous desease.But let me tell you that I am a survivor of this.I got this in 2007.I still suffering from sideeffects of this like constantly bleeding in my urine due to that it attacted my kudney. But I am still here by the grace of Jesus and Jesus alone (and medicine).Do not give up.
I just found it too! Attack my kidney was in hospital 6 days ago on chemo drug to put in remission strict diet. Lots steroids vitamins, it will be a long road but they think we caught it in time. God is good! Hang on! I’m still learning…
I asked my doctor last year to see a specialist bc there was something wrong with my veins. He told me to accept that I was aging. Then I had ischemic colitis, lung atelectasis, and pneumonia, followed by bleeding from three orifices. I’ve gone deaf in one ear and I have kidney disease. And he tried to give me an SSRI. True story. I thought I had endometriosis, but my OBGyN said it would be very unlikely that I had thoracic endometriosis. My doctor ignored my bleeding, my bad GFR, and my high CRP, because he was convinced he was right and I was wrong. His inaction may cost me a kidney.
Yup f ing docs. Medical community s----cks. I have requested plasmapharesis and they are refusing giving me a death sentence. I was on methotrexate can't tolerate. Still on dexamethasone doesn't help. I believe antibiotic Cipro started this.
Very sorry for the loss of your kidney! Your story is almost identical to mine, and after YEARS of inaction by ‘doctors’ who knew less than I did…I was FINALLY diagnosed with Behcet’s (which I had suspected all along)! Good luck, and GOD BLESS!
I was on Vac, doing a lot of walking and standing. It wasn’t a problem, I enjoy walking. Noticed I was getting red blotches on my lower legs an they we’re getting swollen. My left leg was worse, it looked like Cherry juice was Splattered on my legs. Besides the pain an swelling, I started not feeling well. Legs started looking worse with more of Bruised look starting to appear. Every chance I could I would use ice an keep them elevated. By the time I returned home it started to fade some, made an appointment w/ my Dr upon returning. After some Bld work, she said it was a form of Vasculitis. Was told to see a Dermatologist. My legs don’t look that bad anymore so I feel if I go they’ll just blow it off. Still have a lot of Pressure an pain in my legs.😔. I feel like I just have to live with it.
It is so well documented. When can doctors be held responsible for not properly diagnosing this disease? How do you spell CLASS ACTION LAW SUITE? The disease is not rare just undiagnosed. SIMILAR to Legionella bacteria and its disease. It took years, decades, to get doctors and medical centers to get on the right path.
All doctors are practicing medicine. Meaning they don’t know it all but they will do their best to diagnose as well as they can and if cannot should and will refer you to someone else to help. Don’t be a bottyhole. It ain’t easy being a doctor.
I just got diagnosed about 3 months ago and I had no answers for years. This disease is so different for everyone. I only have had a few symptoms but I had a genetic test done which found it in my DNA. I don't have many answers yet but I'm remaining hopeful to get better.
Angelica Colon Pam Payne lungs are affected by vasculitis. The inflammation slowly spreads. You have to eat natural foods and options that reduce inflammation. get your test and find ways to relieve your stress naturally. white sugar, refined carbs & meat are not your friend. If you'd ever like to talk, email me at fmg@frommothersgarden.com 💚
@@Brad10 I would suggest going straight to a rheumatologist because they will be able to diagnose you with multiple tests. I know have high ana levels and inflammation at high rates as well.
I have been diagnosed with many conditions over the past ten years. Fibromyalgia, Crohn’s disease, TMJ, Degenerative Disk Disease and MANY more. Then about a month ago, I was going to have surgery for a spinal stimulator implant but I have tons of sores on my body, especially my lower legs. I have had this for many years. My doctor didn’t want to do the surgery until I found out what is going on, so he sent me to a dermatologist, who took a biopsy from each leg. When he got the results back, he called me to tell me that I have vasculitis. I have never heard of vasculitis until now. I also suffer with extreme fatigue and night sweats, my eyes are blurred and they also feel like they have sand in them almost every day! (as well as many other problems.) I have been taking prednisone for almost a month now but my legs are starting to look even worse now. Unfortunately, I have an extreme sensitivity to steroids, they make my heart feel as though it is going to beat out of my chest! Extremely uncomfortable! My doctor just said that he is going to work on getting me to the University of Utah Hospital because it’s a teaching hospital and so many doctors can put their heads together and see what they can do for me. This is one of the hardest things I have had to deal with because of how extremely painful vasculitis is! Hopefully soon I can get some more help. Thank you for your information. I’m trying to learn all I can about this condition.😕
@@kimannabanfield5523 The problems with your eyes sounds like sjogren's syndrom. (dry syndrom). I would suggest studying toxic overload and the lymphatic system. If you have more toxins going in than coming out it's not good.
Wish you all the best. Please educate yourself and if possible away from steroids, from experience and no good results, trust your BODY which is telling you NO! PLEASE learn and try natural cures, of course if possible. Sorry but doctors are few who care more about people than $$$$. Be well, Friend
I have had a positive ANA of 1:40 with Cytoplasmic pattern. Chronic fatigue, kidney pain, busted blood vessel in leg, leg cramping, and Chronic Sinus Disease. I saw a rheumatologist before being diagnosed with Chronic Sinus disease and she sent me away because my ANA wasn’t high enough. My primary care doctor believes there is nothing wrong with me. I wonder if I will ever get the help I need.
I’ve had at least 6 strokes. A team of Doctors took a while to agree on vasculitis in my brain. One doctor told me it’s rare.."I was 1 in a million…I was the stuff case studies were made of. They put me on chemo because they didn’t know what else to try. I had skin, joint, sinus, low fever problems most of my life. I had sorted treatments & diagnosis. One neurologist finally found that France had 6 patient records in their National health system & they had discovered a drug used for something else worked. Once I started the drug, my strokes stopped. Too late for me. I have stroke disabilities. My area now has 3 confirmed cases now that my neurologist treats. Everyone else is okay today because they got the drug before serious damage was done. I wish I knew my skin problems, joint problems, sinus problems, buzzing sensation that I figured was my nervous system or something were adding up to vasculitis. I never would have thought. I was 58 so my repeated tiredness, weakness, speech & motor skills problems were all that! ☹️
Hello Dear, could you please guide me, my father has found it's symptoms on his hands' fingures. Kindly guide me how to get rid of this disease. I shall be very grateful for your advice.
My dr diagnosed me with vasculitis based on symptoms. This pain is horrible. Awaiting results of punch biopsy. Labs came back normal but I have subcutaneous nodules, redness, rashes, pain and vessels are bleeding and bruising on foot. Cough at night but not sure if related. I have several autoimmune diseases.
Pam Payne lungs are affected by vasculitis. The inflammation slowly spreads. You have to eat natural foods and options that reduce inflammation. get your test and find ways to relieve your stress naturally. white sugar, refined carbs & meat are not your friend. If you'd ever like to talk, email me at fmg@frommothersgarden.com 💚
Maco Jb Mine started after a period of extreme stress. Pam Payne lungs are affected by vasculitis. The inflammation slowly spreads. You have to eat natural foods and options that reduce inflammation. get your test and find ways to relieve your stress naturally. white sugar, refined carbs & meat are not your friend. If you'd ever like to talk, email me at fmg@frommothersgarden.com 💚
Does vasculitis cause chronic bone infections?? I’ve been having them for them for 21 years, a total of 24 surgeries on my collapsed, infected & almost dead bones from my teeth, sinus, feet & big toe. Been on IV antibiotics 12 times w/ staph, streptococcus & actinomycetes bacteria’s. I also have lupus, Secondary Raynaud’s w/ ulcers on limbs & non-healing sores on finger tips & toes, mouth etc..until Sildenafil has helped reduced them. I have Sjogrens Disease, Had thyroid cancer, have the double mutation of MTHFR, osteoporosis, osteoarthritis, chronic osteomyelitis. I’m on Sildenafil 20 mg 3x a day which has helped at times, Plaquinel 2 pills 200mg a day, baby aspirin, a currently IV Antibiotic as they are talking about removing my big toe.
I have it in my brain since 1991. I think it could be going to my legs now. I have been seen In Boston when I lived in Massachusetts. At Beth Israel, Brighams & Woman’s and then Mass General. I was also sent to McGill University in Canada. I now live in Virginia VCU did not help. I am setting up new doctors at UVA. I had 4 brain biopsy when in Massachusetts.
Im turning 40 this year I was diagnosed with epilepsy when I was 18 multiple sclerosis in 2010, hyperthyroidism last year and now vasculitis im not sure what this illness is any information would be grateful, listening to this is worrying me😕
livin abox there is no "cure" for vasculitis it is a lifelong disease that can be maintained. Why would you even be seeing a dermatologist for vasculitis anyways it is a life threatening autoimmune disease not a skin condition that can clear up in weeks or months. i think you are a little confused
@@WillowX5 ur naive. It DOES affect the skin as the skin is the biggest organ. Have u ever seen vasculitis scars? Omg...i have it and its gnarly and very depressing. Thats y u c internists, rheumatologist AND dermatologists.
My rheumatologist didn't recognize it in the early stages. She sent me to my dermatologist who recognized it as soon as she saw it. I also followed a green smoothie diet (Dr. Brooke Goldner--you can find her program on YT) & cleared mine up. I was able to stop all meds. Unfortunately, I let my busy schedule get in the way & didn't keep up with the smoothies once it cleared up or keep walking daily...and it has flared up again. However, if I stay off my feet , manage my stress well, and flood my body with excellent nutrition, it keeps the symptoms at bay.
My g.daughter at the age of 4 suffer from poly athritis nodosa pan. A rare disease .The youngest here in the phillipines.please help us educate.,how can we prevent it .my facebook acct. Is open for those willing to give us support and information about it.thank you and god bless
i was diagnosis with SLE LUPUS AND I KEPT GETTING LITTLE PIMPLE LIKE THINGS ALL OVER MY FACE, ARMS, NECK AND LEGS THAT LEFT ME WITH SCARS AND SKIN DISCOLORATION ESPECIALLY ON MY ARMS I NOTICED THAT I HAD A FEW ON MY LEGS BUT THE ONES ON MY FACE AND MY ARMS WERE SO ITCHY AND I COULDN'T STAND THE WAY THEY LOOK AND I WOULD PICK THEM SO BAD AN D W HITE PUS WOULD COME OUT OF THEM AND THEY WOUyļyLD BE FULL OF WATER AFTER I WOULD PICK THEM THEN TO COVER THEM WITH MAKE UP WERE THEY WOULD GET INFECTED
@@littlelambslearninglabinc.4780 weird story i ended scraping my leg got a real bad infection really bad had to get surgery and the antibiotics they gave me helped cure w.e it was
Age 70 Nam Vet 6' 170lbs (was). Took J&J booster 21 Dec 2021on the 28th Dec 2021 cam down with covid. Had mild symptoms and well all gone. But afterwards I started going downhill. Was getting tired, instead of two donuts on the way to work down to one too nothing. Pain developed in work movements. June 16 wife took me to OSUH had lost 32 lbs did not know where I was or date, severe malnutrition! NOTE A DOCTOR TWO DAYS PRIOR DIDN'T NOTICE MY CONDITION? Well 4 spinal taps, 4 MRIs 3 cat scans, Tube through my nose into my stomach OUCH THAT HURT very sick puppy stayed 21 days Cause unknown . Sent home on steroids to be weaned of steroids guess what? Hospital again this time blood clots in lungs and leg! Messes up more testas I am on blood thinners, Just about everything to has been guessed. CURRENT GUESS CNS vasculiti
Same here, went downhill after Pfizer vax and lost 38 lbs in 5 month. Leg pain, chest wall swelling, swollen lymph nodes, fatigue, and more. They just told me they think I have PAD. I am only 41 so they brushed me off for a year. They still do not know why I am losing so much weight but I am sure that jab messed me up!
@@nopressurenodiamonds5566Same thing with me and my wife. Vasculitis with kidney failure, lung and heart issues with rapid weight loss right after the Pfizer vax.
Same here, i found this this just recently means after my covid vaccination. It's came suddenly, and there is no history in my family about this condition.
@@Campermod Me too! I am 41 yrs old and was healthy before it now they say I have PAD. Also lost 38 lbs in less than 5 months but they have no answer for that.
I am now just being diagnosed and have to go get a stent put in my lower leg in 2 weeks. I have it in both lower legs. I have not had one covid vaccination so can't blame it on that..
@@nopressurenodiamonds5566 Me too. I lost 42 lbs in the past 6 months with also PAD. Peripheral Artery disease. The rashes in my lower legs are horrible, and so painful!
