Diagnosed with Systemic Lupus Erythematosus | Man with Lupus

Подписаться 1,3 тыс.

Просмотров 1,2 тыс.

50% 1

Welcome to another installment from 'Man with Lupus', today I was officially diagnosed with Systemic Lupus Erythematosus by way of the AVISE SLE Diagnostic Test. It has been a very long journey for me, well over 10 years and countless doctors and it all culminated in a diagnosis of Lupus today. Many would think that being diagnosed with Systemic Lupus would be a bad thing, but after living for so many years in pain and with major fatigue it feels good to know that I actually have a very serious condition and that it's not all in my head.
That said, I have continuously done my best to stay active, remain in good shape and eat right. I continue to do my best to remain active regardless of my Lupus. Sometimes that is very difficult, other times it is manageable. I would love to know more about how you handle your Lupus daily so please comment below.
Info on The Lion Diet: liondiet.com
AVISE SLE Info: exagen.com/tests/lupus/
#ManWithLupus #Lupus #LupusWarrior
#lupussurvivor #lupusawareness #lupusincolor #makelupusvisible #autoimmunediseases #autoimmunehealing #autoimmunedisorder #autoimmune #sle #systemiclupus #healthylifestyle #livehealthy #health #healthylifestyle #AVISE

Опубликовано:

29 дек 2022

Ссылка:

Скачать:

Готовим ссылку...

Добавить в:

Мой плейлист

Посмотреть позже

Комментарии : 41

@manwithlupus Месяц назад

Are you enjoying the content here on the 'Man with Lupus' RU-vid Channel? Would you like to have a specific topic featured for discussion in one of our upcoming videos? Please comment below with your questions, topic and ideas and be sure to SUBSCRIBE so you do not miss YOUR VIDEO!! In the meantime, here is another great video from 'Man with Lupus' ----> ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-fU5teJ7ztdM.html

@CherryRussellTraffanstedt Месяц назад

Medical gaslighting…the struggle is REAL! I’ve been blown off my 99% of the doctors I’ve seen. I was even hospitalized a few months ago and they told me it was a somatic issue. I had a mini stroke. That’s why I was there. It’s nice to have proof and validation.

@manwithlupus Месяц назад

Yeah I totally agree. I was feeling like I was a crazy person and totally out of my mind. Being diagnosed gave me a huge sense of validation.

@jerbearlolz Год назад

Wow. I am a male with Lupus too and damn, your story sounds soo much like mine. Thankfully I was diagnosed within 3 years of symptoms showing up, but I've dealt with doctors/family not believing me and saying terrible things about me. But your joint pain, fatigue, and other things you deal with sounds so much like with what I deal with. Lupus can be aweful! Thank you for sharing your story

@manwithlupus Год назад

Thank you for watching and sharing man! I'm still a little shocked that I have lupus. And the pain... my gosh is it terrible. The fatigue is the same way. I'm really in a funk right now again and struggling. Please feel free to stick around and comment/share away. I'm trying to build a nice little community here where we can all help each other! Any suggestions for video content would be greatly appreciated. I want to do videos that help everyone out!

@jerbearlolz Год назад

Yeah it’s nice to finally have a diagnosis, but there is definitely a grieving process once you know you actually have Lupus. Have they gave you any prednisone along with the plaquinel? Once they put you on the right medications, you’ll definitely feel a lot better man. The plaquinel can take several months - 9 months to fully kick in. They started me on plaquinel then methotrexate 6 months in, and the methotrexate is the med that has really helped me out. As for content ideas, continuing sharing your story from a males perspective! Us males are a minority in the Lupus community and I haven’t heard much of Lupus from a males perspective.

@manwithlupus Год назад

I was put on prednisone right away but it has always really made me go off the deep end mentally. I gave it another try after diagnosis and within a week or so I was down to sleeping only one broken hour of sleep at night and getting paranoid and having anxiety attacks. Steroids have always done that to me and so I had to stop taking it. I have another appt coming up in a few weeks so hopefully we can address that situation and get something else going. So far, I feel no different. I also have some complications in that I have an undiagnosed neurological situation we’re trying to figure out as well. Some of my pain and numbness can be attributed to that so it’s confusing knowing whats Lupus and what’s not. Have you tried any meds that had any side effects for you? Is methotrexate the low grade chemo-ish medication? When we first started talking about all of this I knew the steroids were gonna be an issue and I read somewhere that there was a chemo based treatment and I had a feeling that would the better option for me.

@user-ym9wb2mk5e Год назад

@@jerbearlolz Hydroxy has really helped, other than the prednisone and other steroids used to treat "gout". The methotrexate completely destroyed me (depression and the risk, after reading that it is used for organ "transplants, and couldn't get out of bed", I stopped taking it asap). I am on plaquinel now and it's def helping. I had buildup on my knees, hand and finger joints, elbows look like they had golf balls in them, and the neck/shoulders too. The prednisone has helped in removing a majority of it. Tremors, no sleep, anxiety, tense blowups when I need not be mad, and the continual lack of deep, core energy is what seems to be the worse. The nausea and headaches are intense but I just gotten use to them.

@carlosvillareal267 4 месяца назад

Thank you so much for your videos and sharing your story. I had a rheumatologist appointment yesterday. I’ve done so much bloodwork done. I’m feeling a little hopeless because my rheumatologist said there’s certain criteria one needs to meet to officially be diagnosed with lupus. The craziest thing was she said fatigue isn’t on that criteria list and that’s probably my biggest symptom. While she can’t officially diagnose me with lupus, she said it’s definitely lupus related. Some of my bloodwork looks normal, and some have come back positive. My levels are nowhere near yours. I’m just tired of being tired. Also, I never felt this way until I got Covid back in 2020. My rheumatologist believes I had an undiagnosed autoimmune disease and when I got Covid, it caused it to flare up. I’m hoping I’ll get a diagnosis soon so some sort of treatment can be given to help me. It’s definitely a frustrating situation. Thank you again for sharing your story.

@manwithlupus 3 месяца назад

On that stinks. It is very hard to get diagnosed. For me, I so not have a very typical presentation. I don’t get butterfly rash. My biggest struggles are pain and fatigue. Every joint in my body is in extreme pain. When I wake up it’s extremely painful to even get out of bed and stand and walk. It’s tough.

@steffanac12 5 месяцев назад

Thank you for sharing your story. I'm currently being tested for all immune diseases but I keep thinking it's lupus. Many relatives on my dads side of the family had it. My dad passed away in 2010 and was in terrible health, he hated doctors and would never go. Your symptoms seem to line up with mine for the most part. My neck, lower back and hips are throbbing constantly. In fact, last night I woke up and was balling like a baby right away. If it hadn't been for a family member I would have needed to call for an ambulance. I'm currently taking a lot of pain medication- Hydrocodone, morphine, Tizanadine, Ibuprofen and max amount of gabapentin. The medicine doesn't seem to help right now unfortunately. I live on ice constantly, sensitivity to light, severe migraines, eye pain. I am not healing from surgeries either. Thank you for taking the time to make these videos. I am currently watching them.

@manwithlupus 5 месяцев назад

Ugh that all sounds very familiar. I’m so sorry. It’s so hard. Please stick around and keep us posted. This is a safe place and a place where I promise you’ll be heard and we are all on the same team here hang in there. Look into the AVISE CTD/SLE diagnostic test. That is how I was diagnosed because my symptoms are not typical on Lupus presentations.

@gillani2004 Год назад

Keep it up young man. You are a strong man. I believe you can deal firmly with this monster. My daughter is 24 and she got diagnosed also lupus. Your videos are going to give her confidence, courage and strength. Thanks for sharing your experience and thoughts.👍

@manwithlupus Год назад

I appreciate that! We’ve had a busy couple months with a lot of sickness. Hope to get some new videos out there soon!

@InkedRae 4 месяца назад

Thank you for sharing your journey I’m currently being tested for lupus. I had chronic ITP when I was a baby. So we are thinking I may have lupus now that I’ve gotten older. You helped me list some of my symptoms for my doctor to check, from your other videos.

@manwithlupus 3 месяца назад

Glad to help. Keep us posted!!

@MissEmzarr 8 месяцев назад

I have been told its all in my head, awaiting diagnosis. I feel crazy right now but I'm hoping like you to prove them wrong. Not that I want lupus but I just want the proof I'm not just making this up.

@manwithlupus 7 месяцев назад

Oh man, that is the worse place to be… Waiting for a diagnosis. For me I just spiral out of control and can’t stop reading and researching everything until I get an answer. I’m going through a lot of that right now with another condition.

@theoldcrow7759 Год назад

I'm still working with my doctors to figure out exactly what's going on but I already have a diagnosis of fibro and CFS. I too have neurological issues but my neuro issues mimic MS. I think the only reason no one has suggested lupus is because of how rare it is in men. I'm currently 100% disabled by my condition and for the last 20 years of working I could only do night jobs because of my extreme sensitivity to sunlight, heat, and loud noise. I know that listening to your story and reading the many comments of other men who have been diagnosed has helped so much with hope for the future and the possibility of relief of some of my most troubling symptoms. Your story rings true compared to my experiences and it's helped me gather a much deeper history for my doctors. As far as what I'm doing now to get relief and help with preventing symptoms it's a lot of diet and exercise with huge amounts of OTC anti-inflammatory meds and my doctors have finally started giving me steroids. I'm just now coming out of my last attack, I can see out of my left eye again and I can stand for more then a few minutes now so I think it's working. I went more for a plant based diet with high fiber and as much raw plant proteins as possible. I've found in my case that meat and dairy causes inflammation in my body. I can still eat eggs without too many issues but anything with fat in it is a killer. I spent a lot of time living on the most basic diet I could stand and slowly added foods to see what I could tolerate and what I just couldn't. That and a lot of flexibility training with the intention of reducing joint inflammation. I've had to learn some massage and sports therapy to help but all it really does is cushion the effects of a flair. For me, the hardest part of this journey is the extreme medical gaslighting I've had to deal with. I've had to deal with being talked over and being shouted down when challenging doctors while they refuse to consider anything that their medical network doesn't already have a billing code for. I just wish more doctors preformed medicine as apposed to just practicing it.

@manwithlupus Год назад

I totally feel you on the gaslighting. I spent my whole childhood with nobody hearing or believing me. Then as a young adult I just thought everyone felt how I felt so I never asked anyone for anything because I was told my whole life “we all feel like shit, buck up and stop whining”. By the time I was 30 it was like damn, something is seriously wrong here and it took until 39 to get a diagnosis and they still aren’t sure they have the whole diagnosis. They know lupus and Fibro and some mental health stuff but I have a swath of symptoms that don’t quite make sense and they don’t know what to do with it. They thought it was neurological but I was just cleared. I don’t quite think it’s accurate. Im having these eye seizure things and every time I flare i tank into a horrible anxiety and depression. Like deep deep horrible. It’s all connected. My labs have barely moved after 6 months of hydroxychloroquine and now they’re trying to get approval for benlysta. I’ve been extra nauseated and sick lately, don’t know why. They’re starting to screen for some cancers and stuff too. No answers and all struggle. Im exhausted and overwhelmed beyond belief. Im glad you found the channel! I hope this can be a place where we can all just get honest and open and help each other get through this because this has been by far the most difficult thing in my life. The physical side of it is bad enough and the mental weight for me as a 40yo husband and dad and provider unable to work or even hardly function in life… I’m just sick to my stomach with anxiety and fear 24/7. Which also doesn’t help the lupus… ugh. Hope your having a good day my fiend! I did have a wonderful Saturday this weekend. I climbed a rope which I’ve never been able to do and I took my boy tent camping a few miles from the house. I’m now paying for those things with two days of migraines and horrendous pain and body aches and sweats and nausea… but it was worth the 12 hours of spending time with my kiddo and the accomplishment at the gym.

@karlint39 9 месяцев назад

I know what you mean. On the one hand you are relieved that you have test data that corroborates what you've been saying to your doctors for years. On the other hand, having SLE is not something that anyone wants. In the days leading up to my diagnosis, I had pleural efffusion -- fluid build up around my lungs, so it was difficult to breathe. One doctor said that she could give me some anti-anxiety medicine to help me not worry (presumably about symptoms that were all in my mind). When I went into the emergency room unable to breathe, the doctors ran a whole bunch of tests and told me they couldn't find anything wrong and told me to go home -- even though I was literally screaming in pain. Then they did a CT scan and found the pleural effusion, and I was admitted to the hospital and eventually was diagnosed with lupus after doing lots and lots of tests. It's so frustrating when doctors either don't believe you, or even if they believe you, can't find anything wrong. So frustrating.

@karlint39 9 месяцев назад

For my lung symptoms (pleuritis, pleural effusion), since this is still the accute phase, I have been having chest X-rays like once or twice a week, and CT scans every week or other week. Perhaps about 5 CT scans in the last 2-3 months. That's a fair amount of radiation, so hopefully things will settle down and I won't have to keep doing the CT scans so frequently. The chest X-rays are like 1/100 the radiation exposure, so I'm not so concerned about those. But yeah, blood and urine tests can't tell you much about your lungs, as far as I know.

@manwithlupus 8 месяцев назад

Yeah that was the worst part was spending 20-30 years with people saying I was lazy and needed to step it up. It that I was pathetic. Stuff like that. And meanwhile I’m here thinking “well this is how everyone feels, and everyone does life, so what’s wrong with me” and I concluded that I’m a bad human. It’s the only answer I could think of. And I spent my whole life depressed and wanting to die because I believed I was a pathetic POS. Turns out I had lupus and another condition and I have a very serious sickness. Life is so unfair.

@karlint39 8 месяцев назад

@@manwithlupus I read this post after replying to the other one. "Unfair." That's the exact word. But as the saying goes, "Life isn't fair." Now that you have a diagnosis, though, hopefully you and the doctors can actually do something about it based on that information. Even though you (correctly) suspected you had lupus, with a doctor working for you, there should be lots more things you can do than you could have done on your own. This isn't much consolation, but it sounds like when diagnosis gets delayed a lot of lupus patients already have significant kidney damage. Hopefully the fact that you are still here (such a depressing way to say it) after so many years is because your lupus hasn't attacked your kidneys. Hopefully the diagnosis is the thing that turns the corner for your condition. Wouldn't it be amazing if after a few months (because it takes a while to find the right drug and for the drugs to start working) that you feel better than you have in years? It seems totally possible. I'm looking forward to your future videos.

@manwithlupus 5 месяцев назад

I’m working at it. I have a second condition we have been unable to diagnose that is causing severe bone calcification and bone marrow issue among other things. I’ve been unable to create content lately because I’ve been so sick and going all over the state to see doctors. I’m exhausted.

@user-ym9wb2mk5e Год назад

My diet is pork, beef, and fish for meat intake, within reason of course. I love chicken, but oddly when I eat it now it destroys me with pain and flareups; which is odd because most guys are diagnosed with Gout and meats are supposed to be bad yet chicken is supposed to be the "better" meat. Even certain greens are bad. If I even get near Kale, which we were eating tons along with garlic, for juicing, would absolutely wreck me within hours. It's certainly a learning experience on what you can eat and what you can't. Half the battle is the diagnosis, but I was relieved and ticked off at the same time, since mine was diagnosed as exposure related due to deployment to the the Middle East. Knowing is half the battle my friends.....

@kenzie-anne Год назад

please BE careful taking nsaids continually. i caused irreversible damage to my kidneys & had some liver damage from nsaids and Tylenol. exercise helps with joint pain even tho its painful whilst doing it, it helps. diet has never helped me since my trigger is stress for flares, but i hope diet helps u.

@manwithlupus Год назад

Yeah I’ve had to take heavier pain medications to help reduce the amount of Tylenol and Ibuprophen I take. I’m in so much dang pain 24/7 and it’s like at some point you don’t even care if it’s gonna do damage because it hurts so bad all the time. I wish there was a much better anti inflammatory med that would work for me.

@LivingFree207 Год назад

Will the new test still be accurate if a person is on medication already for inflammation? Great video. Thank u.

@manwithlupus Год назад

I believe the AVISE test may be affected if you’re being tested. You should always have a positive ANA but the other numbers can go down if you’re being successfully treated. My dsDNA has not moved. Some of my other markers have moved a couple points. I still feel terrible.

@LivingFree207 Год назад

@@manwithlupus I'm so sorry u feel terrible. I'm with u. I have the positive ANA homogenous pattern but Quest said there was error and they didnt do c3c and c4c, so not sure if I should do that again since I'm on the 2 meds you are on. I wonder if it would mess up tests. I tried making a couple videos after being homebound most of the last 4 years but the weakness is just too much. I'm so happy you are making these videos for awareness. I'll ask my new doctor about this test you mentioned. I liked the other video where you talk about the cost of being chronically ill. No one really talks about it.

@manwithlupus Год назад

@LivingFree207 yeah I wish I could make more videos. I just spend so much of my time being sick or getting over being sick it’s just too exhausting. But I’m gonna keep plugging away.

@christinawysockiart1521 4 месяца назад

Did they ever test ANA or other autoimmune prior to this final diagnosis round of testing?

@manwithlupus 4 месяца назад

Yes they did. Positive ANA with an elevated dsDNA was what showed up. I also had a few other markers but I’d have to go back and look at the tests.

@carolynrussell4496 Год назад

Are you currently working?

@manwithlupus Год назад

I was in between careers. I sold my old business as it was time and the profits were being affected by policy and I had to make a move. I started building this new business and before I could really get anything off the ground I began getting sicker and sicker. And now I’m just sick almost every single day. Certainly numerous days per week to the point where holding down any kind of regular job would be impossible. I have a very limited part time gig right now doing some graphic design. It allows me to work as much as I’m physically able which usually ends up being about 8-10 hours/week. The rest of the time I’m throwing up, fighting this excruciating hand pain or sitting and staring lost in my own brain. I’ve gone from the sharpest guy in the room to embarrassed to even talk because I can’t hold thoughts and I lose my place and lose details. It’a been a terrible decline for me.

@carolynrussell4496 Год назад

I hate to hear that..I’m going through a lot of the things you have described..Hang on their..I’m not sure how long I will be able to maintain my current job…How do you know when it’s time to apply for disability? I hear so many horror stories about the process

@manwithlupus Год назад

I have a really good primary doctor and I just have a very frank conversation with him. My mom and wife were the ones who really said, you need to consider disability. First, I can’t be competitive in a work environment. It’s not even just not being able to work at all. It’s like, I’m not gonna be able to work hard enough to get promotions or raises. It creates an unfair work environment and at that point I really started to feel like disability was something that would be for me. I spoke to my doctor and he said he thought it was a good move. My one recommendation would be to get an attorney right away from the start. Every person I’ve talked to about this said that is the biggest mistake they made was trying to do it on their own. I got an attorney who will get 1/3 of my back pay upon approval of my disability claim. Then payments going forward I keep the full amount. So it doesn’t cost me out of pocket for an attorney unless I win. And if I win he’s paid out of the back pay the government sends me. So it’s no risk and it’s done right the first time. Then the disability attorneys will walk you through all of it. Mine will take me from initial application; to appeal; to court before a judge. So we shall see. I’m skeptical I’ll get disability, but I do think I deserve it after paying in all those years and now being horribly sick. And it’s not like I’m not sacrificing to make it work either. I’m selling my home; my business; my investment property to downsize and restructure my whole estate to make financial freedom more attainable in the face of this.