My Lupus Story; The Journey of Diagnosis

[tella0784]

Hi Michelle, My name is Donatella, I'm 27y.o.. I've been in bed rest and hosp. since the past spring; like you I have Lupus/RA, Rhupus + more. and l was officially diagnosed with this disease on in July of the week of my birthday actually, lovely surprise. Since then getting out of bed or even moving has been a challenge and when I came across your video seeing you in bed too, I don't feel like I'm the only one. Keep the video's coming sweetie, and stay strong. :) ~Tella

[hermitwoofy]

Thanks for the video, I've definitely had some of the symptoms for years but only a podiatrist once thought I might have lupus (without either of us remembering to ask my doctor to be tested). I have rashes, bladder infections, lethargy (by the way, it's pronounced LETH' ar jee, though if you have it you become leth AR' jic), lung problems and water retention in that area but nowhere near to your problems. It could be from other things, but I'll try to convince my weary doctor to test for it.

[dylanesque66]

oops...sorry. this last post was meant for your mj comments section.

[dylanesque66]

All of Mike's masks were shaped exactly to protect for a lupus malaar butterfly facial rash from UV.

Go look on Google images at lupus malaar butterfly rashes.

They sell those same masks Mike wore at medical sun protection clothing places.

The tabloids making fun of him for wearing them were cruel and stupid.

The umbrellas were also to protect him from permanent lupus scarring on his face from the sun. Plus the sun accelerates the INTERNAL damage from lupus if you have SYTEMIC lupus, versus ju

[ANTIJPUG]

Keep educating please u'r doing well

[LUCAX651]

hi thank you so much for this great video my friend. I am a 17 yr old boy who was initially diagnosed with M.E/C.F.S CHRONIC FATIGUE SYNDROME, however this was a misdiagnosis and just a few weeks ago I was diagnosed with Lupus/S.L.E

I am going through a rollercoaster of emotions such as anger because of the misdiagnosis!!! aargh!!!, fear, sadness,crying all the time,loneliness as all my so called ''friends'' dumped me!!. I need some nice friends help me love luca-asher xxxxxxx

[hba141hba141]

you look great .....

[2pinkpossums]

you are amazing I love your videos and i can relate to so much of your story, thank you so much xx

[meagan2797]

my 29 year old twin sister just passed away from lupus 6 weeks ago. its a very scary and serious disease. please all take care of yourself.

[lovesfreedomtoo]

In my journey to diagnosis, I found I had to get angry to get anyone to listen, but no matter what the docs said, I knew something was wrong, so I would not give up. It took years before I was diagnosed. I have been labeled a hypochondriac, a liar & drug seeker. Those labels with kidney failure, liver failure, heart problems leading to open heart surgery, lung problems, butterfly rash, reynaud's & I wondered what it was going to take. There are times I still wonder, Lupus is so misunderstood

[alyssas2014]

yur definitely not lazy. im always fatigue and people say im lying. I'm 14 years old and i have sle. i was so upset at first and i was scared. i was in and out of the hospital. i may have a less serious case of lupus but i missed half my school year. im still taking all my meds, even though i hate taking them i know they will make me feel better. none of my friends understood that i was allowed outside in the cold or allowed to play sports. i dont have much room to say more. but u r incredible!

[veronicalynn12]

u made me cry...wow im 19 years old and i was diagnosed with lupus in 2006 and ever since then its been a crazy tough 4 years of my life ive been through so much but i just pray and hope nothing else happens the lupus has attacked my lungs so its very hard for me to breath but you have been though alot and thank you for your story and God bless you and stay strong :)

[johnnymoose100]

I lost part of my sight to LUPUS in 2009. I was diagnosed after I had my son in 2005. God Bless

[stefanierose88]

I can really relate to what your saying. I have a lot of physical problems, all over my body. Doctors are not helping me, they cant ever seem to find out whats wrong. Its so frustrating because I know something is wrong and they dont seem to take me seriously because I'm so young.

[stefanierose88]

I have so many of these symptoms. My bones are in a lot of pain, I'm weak and in bed all the time (I'm only 22), I have a major bladded infection. I want to get tested for lupus, but I heard its hard to diagnose. I've been sick for a while.

[NamekianPikkoro7]

Well, I don't know about you, but my family didn't listen to me when I was 8, when I first started getting "symptoms". Today, I've gone through 3 professionals, 5 doctors, and 2 psychiatrists, and I'm REALLY sure I have lupus, but my Lupus panel was all negative, which don't mean anything, I know. It's just frustrating, and I don't know what to do anymore...I'm still waiting for my last heavy metal tox screen, sed rate AGAIN, tsh AGAIN. In the middle of a flare up right now, just pissy...

[TheRulaBaby]

ur such an inspiration. i honestly wish u the best and i'm so sorry for ur pain and suffering. and btw ur beautiful :)

[grettagrids]

I too have lupus so I would like to learn from others. Plz see my vid.

[rusticranchfarms]

Gosh...I feel like Im looking at myself! Except I did not know until 43..Thank you for sharing. Lisa gaines

[lbasc]

you have been through alot in life, pretty inspiring. amazing

[acupuncturekim]

I am 41 years old and I was diagnosed with Rheumatoid Arthritis (also an autoimmune disease).

I was treated with acupuncture and no longer experience any pain or auto immune health issues.

Please consider seeking traditional chinese medicine/acupuncture for your health concerns.

I hope this helps you.

[Michellemlm]

Thanks Kim, a lot of lupus patients have tried this & for mild lupus it is sometimes helpful, However for more severe lupus re: organ involvement, overlapping diseases, due to layers of systemic disease throughout the body, organs, it has proven to not be as successful. Some patients do say they get some relief with but that it is short lived.. however, they also say, "If we could just go every day it would be GREAT" So I agree there's some benefits but not a cure for organ involvement etc..

[Michellemlm]

Also, (ran out of room in the previous comment) I do agree with natural medicine/remedies whenever possible and/or in conjunction with traditional. I love that you advocate for that as I believe it's better to replenish the body, nurture it... and want to thank you for posting about this. And I do advocate people trying acupuncture.. they definitely should see if it will work for them before going on other treatment!

[Kinkyell]

WOW you've gone through a lot! I have a complicated story like yours but Im ONLY 24... going on 25 @ the end of the year. and was diagnosed @ age 7

[echynes]

You're an inspiration. As always.

[puglover50]

Great video...I never get tired of watching your video's and I always learn something new..

xoxoxo

[Michellemlm]

You're so sweet... thank you. I love you

xoxoxoxoxo

[2020Dave]

I don't know if any of you happened to catch the last part of Geraldo Rivera's show today, but there was a Doctor interviewed who talked about Michael Jackson's Lupus and that all the nose surgeries were because of his lupus as well as his skin problems...

I don't usually watch much on Fox, but as I was flipping through the channels it caught my eye...His show repeats tomorrow if you are interested in watching, you'll have to check your local listings for the time...

Great video Michele...

[Michellemlm]

Thanks David! I will check it out!

[gsteviec]

I've seen all your videos and this one is no less informative than the others and the others are all as I rated this one AWESOME! Thanks Michelle. Hearing about Lupus from someone that lives it everyday is TOTAL different from reading about it from a med site or some some article about being "tired a lot" or what ever 2 or 3 symptoms the article may focus on. One of the biggest things I've learned from all your videos is that Lupus is a system problem, not just individual symptoms. Thanks again.

[Michellemlm]

Thank you so much.

[Michellemlm]

It does seem having lupus/probably more from the treatment, some from the illness puts us at hgher risk for cancers... we have to be monitors reg, however, I find most docs in my case and in my friends cases are not being monitored at all... which troubles me and causes me to wonder if those particular docs are aware of this... usually its the same docs that aren't monitoring for anemia/calcium loss, etc.. from the steroids as well. I usually have to ask to get monitored blood work

[vrachou]

Thank you for your comment.There is a medical term drug induced lupus and also medication that triggers lupus(even some kind of antibiotics). I have my doubts and wonders concerning medication.But as Mich said there are no 2 lupus patients alike

[vrachou]

Thank you for the videos. Just like you it took me several visits to several doctors to get diagnosed. Several conditions, 'strange for such a young age" but "nothing to be concerned" joint pains, stifness,lung disfunction,pericarditis,polyp­s,pyelonephritis, serious kidney damage and so. They even thought I had TB and put me on drugs that trigger lupus even more.A 25 years journey. 3weeks prior to my final diagnosis the head of immunology in my country consulted me " just have more sex "

[Michellemlm]

Thank you! I'm blushing a bit... though. Thank you so much for being so supportive and helping educate others about this disease.

[feawguita]

I find this vid very important. Very informative for those of us who are starting to learn about this disease. I will share this with everyone I know to help spread the word arond. Thank You.

[jax252000]

Your videos are VERY important and poweful. I hope to see more of them in the coming months.

P.S. You look very young for your age. I thought you were about 27!

[Michellemlm]

Thanks Jax. ;)

Shhh.. I'm 38 now.. but don't tell anyone okay? lol

[MyMelvinMelvin]

Mom, I love you. I know things have been different since the neuro sp? disease hits but we're doing it and will do it. I hope your vids help others to get diagnosed earlier and what's with the nasty thing? why nasty? sry, I don't get that. It's not like anyone has control of it. I've seen you and you had no control of it at all. I wish!

[MyMelvinMelvin]

LOL.. mom, you cut out before really showing yourself. lol.