The Expert Series S6E2: Visible Symptoms of Lupus

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Күн бұрын

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@elizabethmccaffrey4805 Жыл бұрын

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

@haroutiounkabaian363 11 ай бұрын

Girl I had a stroke reading this

@HLJlovejoy 9 ай бұрын

I’m so happy for you. Literally understand and relate. It took 5 years. I tried every homeopathic thing and professional out there. After every specialist, scan, bloodwork, etc., it was a dermatologist who unexpectedly solved the mystery that was supposedly in my head. Plaquenil was a game changer & a miracle and it’s been working for 13 years now.

@kateskeys Жыл бұрын

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

@mama_keikei8081 8 ай бұрын

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. 🤷🏻‍♀️

@vivavita3769 6 ай бұрын

Under current laws no one except criminals can get pain meds.

@felicia7756 10 ай бұрын

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

@Gjakdjruknownhpjs 5 ай бұрын

I'm actually experiencing these things but the thing is I wonder how many years it's going to take in getting diagnosed. Already dealing with health issues from last 3-4 years.

@chosenministries8929 Жыл бұрын

Very helpful information Thank you

@sharicarter5647 4 ай бұрын

I was dx’d with lupus in 2001 and began treatment. In 2016 a new to me rheumatologist decided I was misdiagnosed and did not have lupus rather hasimotos which Endo said was BS but rheumatologist doubled down with fibromyalgia and stopped my medications and no other doc would give them because she was specialist. 1 year later when I seen Endo again he got me in right away with a different rheumatologist I seen her 2x and then had acute lupus mesenteric vasculitis and brain aneurysm within a week apart. Almost died several times, multiple surgeries and ongoing chemotherapy since then. Lupus is awful disease. Mesenteric Vasculitis is brutal and rare. This has taken so so much from my life. We need way better treatments. We need a cure.

@carolferguson19 Жыл бұрын

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 🙏

@nancycarlos5695 Жыл бұрын

I have been suffering from Lupus disease for some year without having a solution to it until i done a research on KZbin i come and cross Dr.Auchi on KZbin channel. That was were i find effective herbal medicine to cure my Lupus disease permanently without having side effect from the herbal product.. i recommend Dr.Auchi herbal medicine for Lupus disease cure...❤️❤️❤️❤️

@ladeek35 Жыл бұрын

Autoimmune disease is like a runaway train that gathers steam and momentum as it travels down hill, think of antibodies acting this way in our bodies. Accumulating more antibodies with each AI flare. So it’s not aging that does this, but time. Why some people gain antibodies at a more rapid rate, I don’t know why. Best wishes.

@Kim-xk7jn Жыл бұрын

I agree I have fibromyalgia since 2010 for 23 years but have so many lupus symptoms but no one will diagnose me w it. Was also diagnosed w a chromosome abnormality 2 wks ago Trisomy X. and it has so many symptoms w lupus

@kathleenmcgonigle Жыл бұрын

My 80 year old husband has rheumatoid arthritis and was diagnosed in his 50s. He was on Plaqunil for a few years, but his optometrist noticed a change in his retina and his Dr put him on methotrexate and that drug has really worked for him.

@Dreami_angelina 11 ай бұрын

❤

@foxywhitetip7387 Жыл бұрын

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 .

@nancycarlos5695 Жыл бұрын

@ladeek35 Жыл бұрын

When I was in a situation like yours I saw many docs from several specialties and 4 Rheumy’s. I would not stop looking for answers until finally 1 fabulous Rheumy said , “yeah, clearly something auto immune is going on and with unclear labs…let’s work to treat symptoms. That’s what’s happening now, treatment for what is termed Undifferentiated Connective Tissue Disease. If docs tells you IDK or your case is complicated…move on. There are docs out there that are comfortable & knowledgeable with lab ambiguity, after all 40-50% of Rheumy diagnoses are for UCTD, before upgrading the diagnosis to something more specific down the road. Best wishes to you.

@sl4983 Жыл бұрын

What kind of adjustments would be needed for work responsibilities?

@mimirose4012 Жыл бұрын

Thank you.

@estefaniaalvaradomendoza8743 9 ай бұрын

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 .

@adrihernandez4691 9 ай бұрын

Esto es verdad, debería de haber mucha más información en español para nosotros. Yo también tengo (LES) Lupus eritematoso sistémico.

@hannahw2697 Жыл бұрын

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.

@patjonker6576 Жыл бұрын

Time for a new doctor...

@awestphal40 Жыл бұрын

Keep digging. It took me more than 10 years for a diagnosis and told I was crazy and healthy and fine. Finally got a diagnosis yesterday... Lupus, psoriatic arthritis and some sort of connective tissue disease". Dig dig dig and don't take no for an answer.

@lalondabonaparte1691 Жыл бұрын

I’m so sorry to hear this these drs are full of it

@sl4983 Жыл бұрын

@@awestphal40 What's the test for it?

@lucyrose8521 Жыл бұрын

My Lupus was diagnosed by D N A

@ladeek35 Жыл бұрын

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. ❤

@Lottesettle 7 ай бұрын

Where did you go to finally get help?

@user-ud6pw8mq8r 13 күн бұрын

❤ Take care , hugs.

@tinawest8350 Жыл бұрын

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.

@nancycarlos5695 Жыл бұрын

@briansilva4165 Жыл бұрын

HIV can cause a false positive Ana test. The higher the Ana test the less chance it is a false positive. Lyme disease can also cause false positives for Ana and vice versa. HIV causes a weakened immune system while lupus caused by overactive immune system. Doesn’t seem likely unless your prescription drugs are causing it. There is a lupus that is caused by some medications. But also keep in mind hiv symptoms are very similar to lupus so it could just be lapses in how the hiv medication is working.

@janicevincent5518 Жыл бұрын

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

@nancycarlos5695 Жыл бұрын

@briansilva4165 Жыл бұрын

Plenty of sleep, exercise, caffeine and power naps are all great for fatigue. Also if you are suffering from depression or anxiety caused by the lupus that can also bring on more fatigue. Basically do things that make you happy, stay active and sleep whenever your tired

@kevinpoveromo6324 29 күн бұрын

Ginger and ppermint pills

@TabbyKatt69 Жыл бұрын

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

@boomeradvocate Жыл бұрын

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

@rosebudadkins6803 6 ай бұрын

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

@tashv9487 Жыл бұрын

Diet control. We are the things we eat

@sofresh5345 Жыл бұрын

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

@mirellacovarrubias7394 Жыл бұрын

What is ANA?

@sl4983 Жыл бұрын

@@michele21auntiem bad answer

@TheReluctantCarnivore Жыл бұрын

Anti Nuclear Antibodies

@mirellacovarrubias7394 Жыл бұрын

How is it used?

@nancycarlos5695 Жыл бұрын

@TheReluctantCarnivore Жыл бұрын

@@mirellacovarrubias7394 it’s what they test your blood for. If the test is positive, you have autoimmune issues. It’s because your body is producing antibodies to fight itself instead of something foreign.