The Expert Series S6E2: Visible Symptoms of Lupus

In this episode of Lupus: The Expert Series, we learn more about visible symptoms of lupus with Dr. May Choi. Dr. Choi will discuss the difference between visible and invisible symptoms, treatment options, and ways to cope with visible manifestations of lupus.

Dr. Choi is a rheumatologist, clinician scientist, and Assistant Professor at the Cumming School of Medicine, University of Calgary.

[elizabethmccaffrey]

I waited for 13 years to diagnosed I went threw hundreds of blood test X-Ray, Cat scann for my internal organs and living whith almost constant pain in the last 20 years I was relived when I had a diagnosis as people keeped saying that is just in you head. They made me feel like I was from an other planet

[kateskeys]

It would be great to actually SEE examples of these visible symptoms

[mama_keikei]

I saw one person fight for 10 years to get diagnosed. I’ve been in a flare up on and off (mostly on) for 4 years possibly. First Covid in February 2020 flared me up and I haven’t felt “normal” since. Before then I had one for 3 years. They said I had fibromyalgia after 3 years. It’s so hard when your disease causes chronic fatigue and pain daily and I can’t get a pain med to save my life. 🤷🏻‍♀️

[felicia]

I suffer from Raynaulds and I noticed several Dr.s don't believe this is serious, even people I have talked to. I have been dealing with Raynaulds many years and it can be painful, other times the area is numb and I truly believe it effects blood circulation. I have alot of vericose veins, I have Raynaulds in both my feet and both my hands. Picking up something as simple as a pencil when my hands are cold and numb can be difficult

[carolferguson]

Does Lupus get worse with age ⁉️ I had a mild case and a year later I was in remission. However I'm 75 now and have the butterfly rash and flare ups alot. I have have arthritis. I have the worst case of Fibromyalgia in the world. (Can document) I'm on plaqunil. Lupus and Fibromyalgia are called the double whammy. It's very challenging. I'm trying to start a support group for both. I need to study Lupus more. Your information is so great and advantages for us. I wish Fibromyalgia had this coverage. Thanks 🙏

[foxywhitetip]

I’ve shown all the symptoms of lupus, over 5-6 years but not a single doctor has had any clue. Now I’ve had the rash for weeks .

[ladeek]

After decades of symptoms, 8 yrs since inability to work and no diagnosis, over 20 specialists and 4 rheumatologists, lots of incompetence and BS, finally finally finally I will begin treatment with infusions starting in a few weeks. I travel 3 to 5 hrs for medical appointments with hotel stays. When I found out doctor was going to give me infusions to stop this nightmare, I cried all day in my hotel room (after my appointment)… shock, relief, grief at having lost 8 years of my life, anger, and much more.

Please, friends, don’t give up hope, there’s a doctor out there that DOES want to help you get back to living. Go find him or her. Don’t give up on yourself. ❤

[sl]

What kind of adjustments would be needed for work responsibilities?

[estefaniaalvaradomendoza]

Tengo lupus eritemotoso sistémico, me gustaría que los recursos que colocan en la página tuvieran en cuenta a los pacientes que pertenecemos de habla hispana ya que es una valiosa y importante información la cual muchas veces por estás colocada en ingles y aparte por desconocimientos del diagnóstico no aprendemos a sobre llevar lo que acarrea los pro y los contras de esta enfermedad, gracias por su atención prestada y espero sea tenida en cuenta .

[hannahw]

So the symptoms do come and go? My doctor just said I look fine and he dismisses the pictures I show him of my rashes because I don’t have the rash when I’m in front of him. He makes it seem like the rashes I get (from the sun, the lights in my bathroom, and temperature sensitivity/stress) aren’t from Lupus because they only last a few hours. He didn’t even say that I’m on Plaquenil for Lupus. It says for “Reynaud’s and a positive ANA”. It’s very confusing to me. He won’t even say I have Lupus. He says I’m serologically positive for Lupus but I don’t have any symptoms so I don’t have Lupus.

[rosebudadkins]

Over 20 yrs with SLE. It is a horrible disease.

[tinawest]

I am HIV positive under control. I believe I have lupus, how do I get a health care provider to test further. I also have a positive ANA.

[boomeradvocate]

So, where are the photos of visible symptoms? The title of this video is a bit misleading for me. Disappointing.

[TabbyCat]

I consider myself lucky I guess I had a crown break off I believe the tooth sent me into a awful flair ended up in er Tuesday was released back in Wednesday stayed till Friday don’t remember to much but hurting so bad in my whole body I would get hot puke and freeze like sweating and jerking they ran test and said I have lupus now can anyone give me tips to keep from having flairs and tips on pain management

[janicevincent]

Is there anything to help the fatigue, I seem to be tired all the time.

[sofresh]

I saw the picture and immediately clicked. Want to send this to the doctor who told me if I get a job maybe my neck and shoulders wouldn’t hurt. To think here I am asking for a neck brace for relief and you over here being a whole jerk

[tashv]

Diet control. We are the things we eat