Which lupus do you have? Type 1 or type 2 lupus.

[@Bichonfrise369]

I have lupus rheumatoid arthritis and fibromyalgia. I don’t like to bring fibromyalgia up with my dr. I can see her getting upset then I have to deal with everything is fibromyalgia. It is sad that rheumatology only like to see red hot joint.

[@tt2524]

Many general practioners and Rheumatologist don't discuss type 2

[@lupus_ontario]

That is true, and it is so important!

[@marcia-marcahwilliams2411]

My take on rheumatologist , some I’ve had don’t know much about what Lupus does. I had one doctor ask me did I know the formulary for the mouthwash that my past doctor in another state used. I asked him how would I know, I’m not a chemist or a doctor that write prescriptions. I left his practice after that, why go into this field care if you don’t know anything about it. He wasn’t the only one like that, I suffer for months with severe mouth lesions. So over having this disease…period and the doctors.

[@prairiestonecollectiblescu835]

I haven't been diagnosed with Lupus yet but I'm thinking this is what "has me". Thank you for this presentation, Ive found Dr. down to earth and explained things great!

[@WoodyGal56]

Everyone says get help asap….how do you do that when seeing a doctor, your appointment is over a year away? I just don’t understand….

[@Happylilsis]

Wow! Why do you have to wait a year? That’s awful!

[@vicko5000]

Wait for the appointment... Then don't miss it when the appointment comes.. if it becomes urgent, go to ER.. then you'll see someone fast.. I'm not a medical doctor but patients get upset with doctors for waiting so long for appointments.. i always remind myself the world doesn't revolve around me, I'm not the main character, and there are many many people going through the same. There are thousands of us and few of them, we must be patient when we can.

[@prairiestonecollectiblescu835]

A year to wait is unacceptable! Please keep trying to get in, perhaps there will be cancelations! Best wishes to you!

[@marcia-marcahwilliams2411]

My take on rheumatologist , some I’ve had don’t know much about what Lupus does. I had one doctor ask me did I know the formulary for the mouthwash that my past doctor in another state used. I asked him how would I know, I’m not a chemist or a doctor that write prescriptions. I left his practice after that, why go into this field care if you don’t know anything about it. He wasn’t the only one like that, I suffer for months with severe mouth lesions. So over having this disease…period and the doctors. Have anyone been diagnosed with Sero Negative RA ? It’s No joke….it’s so painful burning and freezing…all at once…brain fog… and extreme fatigue.

[@karinbrown-barrios4577]

I have secondary sjogren's syndrome I'm almost positive I have Lupus type 2. I don't know if my rheumatologist is aware of it I will show him your video and maybe he'll learn something

[@kerriegibson7562]

I have sle and cutaneous and also lupus profundus

[@sheerazhenderson572]

Thanks for this presentation. Very informative in my understanding of the disease. So much to learn in own disease management both now and ultimately in the future - feel like I’ll never know enough or full picture of disease. Knowledge is definitely empowering when this disease and its unpredictable associates can remove the ‘good health’ we once took for granted.

[@CaptainKirk1963]

I have SLE I dont even waist my time with Rhemo people. They do nothing for me.

[@WVgrl59]

True

[@Chrysalis616]

I was just diagnosed “likely to have lupus but need to see a rheumatologist” and I’m not sure what type I have until I do because my nurse/doctor doesn’t know. Just curious, may your explain what you mean by this comment and what rhemo people means if you don’t mind? I’m debating on going to a rheumatologist or not because I have little to no faith in the medical system at the moment. Apologies for the rant, just trying to get some answers 🙏🏼

[@rosebudadkins6803]

Me too! Done alk treatments & drugs. Nothing has helped. I am American Indian and we don’t do well with the meds/treatments.

[@ad6417]

​@@rosebudadkins6803Have you tried spiritual remedies?

[@vicko5000]

​@@Chrysalis616establish a relationship with a rheumatologist, the likey hood you will need them at some point in high. It may not hit you often and al ays but if could knock you out for weeks at a time.. or you can be suffering unnecessarily.

[@ttaylor8239]

I have a BIG question. So I've been diagnosed with Lupus SLE since I was 19. I'm 49. That being stated in the last several years, I have grown 6 masses of unknown origin. Two are in the brain. One is in the sinus cavity. Two are in the right breast. One is in the left breast. No biopsies have been done on ANY of them, and everybody keeps saying "Well, we think they're okay. My grandmother had Scolderma for added context. Is there ANY known conditions associated with Lupus that would involve growing masses?"

[@ad6417]

Isn't it awesome to test positive for ANA, ssDNA, and others, all the symptoms and the nurse says you probably don't have autoimmune disease. 🙄

[@mariselacorral1893]

I tested positive for ANA, high anti-dsdna, plus a multitude of symptoms and rheumatologist said it’s “fibromyalgia.”

[@sharicarter5647]

Hello Ontario 👋 from Indiana. I’m sure I have both types I have also developed mesenteric vasculitis and brain aneurysm. I am very blessed to still be here even if in diminished condition. Can you tell me what is the gold standard care for this In Ontario or Canada? Thank you.

[@TwoSeasons3396]

What about lupus that presents with chronic angioedema and urticaria???

[@rebeccajohnson629]

Im type 1 trust me its now causing liver issues,throid issues too

[@seidayusuf3294]

I have all type 1 lupus, but ANA and biopy skin and muscle were negative

[@LoriZ-y8p]

Very informative. Thank you. My Gran passed at 61 undiagnosed from SLE. my mom passed last year after 64th birthday undiagnosed both SLE and Ms as well as diagnosed Hereditary Alpha Tryptasemia. The Uni Coroner said we all need to be tested. My ana was negative in fall, but dealing with alot aches and fatigue lately when im very energetic and want to be retested at the Uni. I felt i was dismissed at the Rheumatologist. Is it too early stage for positive results or im not as severe as them (at 45yrs old)?

[@Queen_OfLeos]

I'm not a doctor. But you need to be a severe flare for some antibodies tests to show up as positive. I've suffered undiagnosed for so long (similar age) and let me tell you, pain is not normal. I knew before I was diagnosed whilst still under investigation. When confirmed I thought I was prepared. But nothing really prepares you. Wishing you luck, I hope its not lupus though x its awful x

[@yaelWolfebaz]

I just got diagnosed, had mostly minor symptoms for 10-15 years and negative tests, suddenly had a flare and dsdna extremely high, so probably yah- you have to meet enough criteria. Also drs want to see the numbers

[@LatchkeyKidX]

There also needs to be more awareness and diagnosis in men of all races. Just listening to this lecture shows how man get forgotten about with this disease. I’m a white male 40 with the disease

[@flea10x6]

I completed a full formal neuropsych eval after a non dominant hemorrhage and my "goofiness" post. I have been unable to find out exactly what i was or was not doing. My SLUMS was like 22 or 24. I am assuming I was off the fentanyl and any benzodiazepine long enough that it should not have been interfering. During Cognitive therapy post, I mentioned concern since much younger re possible ADD-Inattentive. The neuropsych was consistent with ADD but the neuropsychologist mentioned that the Executive Function issues are noted with Lupus as well. Unfortunately I am not certain I can understand how SLE activity interferes with neuronal function or possibly neurotransmitter specific. (I do have some improvement with atomoxetine which acts more at NE synapses (and presumably where amphetamines also work.) Pred helps too, and together ... But I still cant figure out hoe pred makes a difference. Since I have Rufus, I'm not certain how much MSK issues are RA v SLE.

[@marucastro7789]

How to treat type 2, pls..

[@britnilee6229]

How is Type 2 treated?

[@simhifree]

Doctor, please answer my question. Is Drug Induced Lupus a type 1 or 2? How many drugs are known to induce Lupus, at this time? 63 F with RA x 30yr. Also, Hashi, Sjodren's, Cushing's, Lupus and who knows what else.

[@Faye-jewel]

Type 2 requires more of the doctor to be liable for once you report it Pain : controversies Fatigue: off label If u can’t do a job you can’t be a homemaker It gets to the point your nothing to no one

[@flea10x6]

"Type 2" is much like "B" lymphoma symptoms.

[@rebeccajohnson629]

I have lupus , fibromyalgia at very least

[@Queen_OfLeos]

Mixed 😢

[@SelvyBushby]

Waste of time going to the drs. They cannot give you definitive answers. Even my blood test was negative

[@rebeccajohnson629]

Im type 1 trust me

[@sharicarter5647]

Hello Ontario 👋 from Indiana. I’m sure I have both types I have also developed mesenteric vasculitis and brain aneurysm. I am very blessed to still be here even if in diminished condition. Can you tell me what is the gold standard care for this In Ontario or Canada? Thank you.