My Scleroderma Story: SCL-70 Positive
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- Опубликовано: 27 сен 2024
- I was diagnosed with Systemic Sclerosis - Scleroderma in 2016. This is my Scleroderma story and what living with SCL-70 is like for me. This video details my diagnosis process and treatment.
For more information on Scleroderma and Scleroderma Treatment Centers, visit: www.scleroderma.org
#Scleroderma #SystemicSclerosis #DiffuseSystemicSclerosis #AutoimmuneDisease #ChronicIllness #Methotrexate #Cellcept #Plaquenil #Mycophenolate #Rheumatology #MySclerodermaStory #RheumatoidArthritis #Lupus #SclerodermaAwareness
My daughter has Hashimoto’s disease. Because autoimmune disease runs so rampant in my family, my MD tested me and I just tested positive for SCL70. Thank you for your video.
Just tested positive myself for the SL-70. Been having many issues and finally a doctor decided to test me for this. A friend of mine mother had this and it wasn’t pretty. She was in constant pain. Thank you for this info.
I’m sorry for your recent diagnosis. The good news is with a diagnosis usually comes treatment options for the number of issues we lived with before diagnosis…I hope you are able to get some good treatment and care with this diagnosis. Scleroderma looks so different for everyone, I’m glad I could share my story. Although still not perfect, Scleroderma treatment options are much better now than they used to be. I’m sending good vibes your way! Hugs, Warrior! ❤️
@@ElainesAutoimmuneAdventure Thank you. Working with my doctor for options. Thank you for sharing your today. 😎👍
Thank You for sharing your story and helping to raise awareness!
Thank you for watching! ❤️
Thank you so much for your honest truth about having scleroderma. I would love to talk with you some more about scleroderma because I had my blood work done and having difficulty breathing and sometimes walking.
If you have any specific questions I could help with from a patient’s perspective, please feel free to ask here. ❤️ I’m sorry you are on this journey as well. I hope you have an understanding Rheumatologist who is helpful and. hope you find a good treatment plan that helps. I’m sending good vibes your way. Hugs, Warrior!
Thank you. I have a doctor named Dr Daniel Wallace (he is an author and has a big research clinic in Los Angeles) and he diagnosed me with a rare systemic lupus 32 years ago (SLE CNS vasculitis) after I had a stroke from it.
UCLA missed my diagnosis.
Once a year he still does a ton of labs to make sure I don’t have any flares of this disease as it’s so rare, my regular rheumatologist doesn’t have the lab to run these tests.
Last week the scl 70 AB came up positive on my labs and I have a dry cough with shortness of breath.
As an RN myself, I’m not really worried about it yet as it could be a false positive, but I also want to get some patient feedback on it just in case. Your story is super helpful. Thanks again for sharing and I hope you’re doing well. ❤
any updates?
Thank you for posting learned so much from your video. Keep it coming love the positive vibes you give #supportsclerodermaresearch
Thank you for watching and for supporting Scleroderma awareness! ❤️
Hi
My SCL 70 is positive
Is there any food restrictions or we need any specific food to take so that SCL 70 can come down
Hi Vikhyath! I’m sorry for your recent diagnosis. SCL-70 is a Scleroderma antibody, it isn’t so much a marker of disease. In my understanding, it is a part used for a Scleroderma diagnosis but not a marker for disease activity. But, SCL-70 can be a false positive which is why Scleroderma is a diagnosis made on symptoms. I do suffer from SIBO (small intestine bacterial overgrowth) from Scleroderma and I follow the Low FODMAP diet which does help with my GI symptoms. I hope that helps a little. Hugs! ❤️
I like your personality it shows through
Thank you so much! 🥰 I’m happy you found my channel.
I have a very very similar story and I googled the Scl-70 and freaked out. I’m a little confused and I’m going to ask my doctor about it but In February I had a anti-Scl-70 of 3 and they said it was negative because the reference range was
I’m sending good vibes your way. The road to diagnosis can be such a long and tiring one. My best advice is to find a good Rheumatologist who you click with. It might mean a drive or travel but it is so worth it in the end. If Scleroderma is your diagnosis, please check out seeing a Rheumatologist at a Scleroderma Center. Scleroderma and SCL-70 looks very different in patients so no 2 journeys are the same. I’m glad I could provide some hope. Hugs to you on your journey! ❤️
@@ElainesAutoimmuneAdventure you are God sent 😍thank you so much for the video. I googled too about anti-scl-70 antibodies and I freaked out.
I’m glad my journey helps. Google is such a scary place, I’ve been there. Stay strong Warrior and write your own statistics. Hugs! ❤️
Same here
I just received positive test results for ANA and SCL-70 and have to wait 2.5 months for a rheumatologist appointment. I’m here because of the internet rabbit hole but I’m encouraged by your story and your advice is so helpful. I’m going to seek treatment with a rheumatologist who specializes in scleroderma now. I’m young with 2 young kids and it has been scary to get these results but finally a doctor will actually take me seriously now. Anyways, just wanted to say thank you and hope you continue on this healing journey with hope!
I’m so glad you are able to see a Rheumatologist. I’m sending good vibes you are able to get some answers and find a good path to stability and health. ❤️ I’m glad my journey can encourage you. Google is super scary…I was terrified when I was sitting in your shoes. I found that info on Google is really outdated. Hugs, Warrior!
How are you doing?
@@springchicken2513 Hi Spring Chicken! I met a great doctor and feel confident in his care. I started cellcept and test results are showing improvement. I'm hopeful but will continue to be better at exercising and managing a healthy diet. Thanks for asking :)
@@peachesparkhello how are you now? Any skin involvement in face etc?
Thank you so much ❤❤❤
❤️
My 6 year old just got positive results for this and it's started in his feet.
I just blood work testing positive for it. Gotta see my rheumatologist asap
I’m sending good vibes your way. I hope your Rheumatologist is able to give you good information! Hugs! ❤️
Thanks you ❤❤
❤️
Thank you
Thank you for watching! ❤️
my scl70 was positive 2 weeks ago My doctor said it was defused cutaneous scl70.
I don’t believe this is the same as yours, but I’m still very worried because I am a quadriplegic and I have been dealing with headaches and increase heart distress. my troponin levels are slightly elevated. I have an appointment to see a rheumatologist on September 24th. I hope I will be OK until then. 🙏 are there still a chances of me having children and getting a job? Thank you for sharing your story.
I’m sorry you’ve found yourself on this path. My scleroderma antibody is also SCL-70 which is associated with diffuse systemic sclerosis (although my skin score is low with the help of treatment). I’m happy to hear you have an appointment with a Rheumatologist. The internet has really outdated info on Scleroderma. There are medical advances and promising treatments now. I still work full time. I do have accommodations to help me succeed at work. I wasn’t blessed with children but that was never scleroderma related (that’s a whole other story). I’m sending you positive thoughts for your upcoming appointment. ❤️
Hi, thank you for sharing your story. I was diagnosed with Scleroderma a year ago and I am taking salsa 2000 mg a day along with one injection of methotrexate 20 mg once a week I have never taken any medication at all it has helped but I’m wondering, is there ever gonna be a time of remission where I can Wean out of these medication’s. Last thing I was going to ask was does anybody have discoloration of skin and if so, what are you taking for it and does it ever go away?
Hello I hope you are good now. My mom recently diagnosed with scleroderma and her sck-70 level is 124 which is very high. So I want to know that is it possible to reduce this and cure this problem and live a normal life. Im worried for her as doctor is saying it is life threatening disease and Google showing me the same and i really want to know how to deal with scleroderma disease. Please give me some information how are you dealing with this. Sometime there is itching problem then her skin and face swlles. I'm really don't know what to do. And i belong from India can you suggest me some site or some books from which I can gather information about this disease.
I’m so sorry to hear about your mom’s recent diagnosis and scleroderma battle. I’m in America and am using medications to help with my scleroderma. There is a really good book written by Dr. Maureen Mayes called The Scleroderma Book. She is a scleroderma specialist here in America. I found that extremely helpful at the start of my diagnosis. I suffer from a lot of GI issues and follow a Low FODMAP diet. That helps me with my SIBO issues caused by scleroderma. You should be able to find that on Google. Of course, I’m just a patient so these are things that work for me. You may want to search Scleroderma support groups on Facebook. I think a couple have members from India who may be able to give more guidance in your country. I’m sorry I can’t be of more help. I’m sending extra strength to you and your mom!
It's weird ANA IFA mine is always negative but other antibodies are positive and I do have autoimmune disorders one even effect my kidneys and I have symptoms of scleroderma and my scl70 is positive but doctor said negative ANA so I don't have it
Blood work can be so confusing. I think since Scleroderma is a diagnosis made on clinical findings (factoring in blood work) that seeing a scleroderma specialist or Rheumatologist familiar with Scleroderma is an important step. I’m sorry you are struggling. A second opinion was crucial in my journey so never feel bad to seek other opinions. Hugs, Warrior! ❤️
I have a friend that has the worst case of systemic scleroderma and never tested positive for ANA or antibodies of any kind.
@RavensMoon I think that is why consulting with a Rheumatologist who is an expert in Scleroderma is so important. Because it is a clinical diagnosis, it is so important to have a physician who looks beyond blood work. I hope your friend is finding her medical team is helping with quality of life. Thank you for sharing. ❤️
If you have a positive SCL 70 is sooo important!!! You don't need to have a positive ANA.
Look for other rheumatologists!!
Sorrry your suffering. Pictures would be super helpful. But most of us get it.
Thank you for the suggestion and for watching! ❤️
Hello my mom was recently diagnosed with scleroderma. Can you please give me information on the doctor who is treating you. I need help please.
Hi Diana! I’m terribly sorry to hear about your mom’s recent diagnosis. You’re a wonderful daughter to seek out information for her. I am in LA County so I am a patient at Keck USC. Their Rheumatology department is excellent (all the Rheumatologists are great). But, you probably want to seek out a Scleroderma center for your mom. On the Scleroderma Foundation website you will find Scleroderma Centers all over the US. In LA County, UCLA has a Scleroderma Center. There is another up North in San Francisco at UCSF. Getting care from a Rheumatologist who specializes in Scleroderma is absolutely the best thing you can do. And please remember a lot of the information on Google is out dated. There are more treatment options now than were available to us 5-10 years ago. I hope that helps. I’m sending extra strength your way. Hugs! ❤️
@@ElainesAutoimmuneAdventure thank you so much for the information! I really appreciate it 😢 and I will look for a center for sure. God will keep guiding me with the right people like you for information 🙏 God Bless you and your family
I have sceledrem also
I’m so sorry you have found yourself on this journey as well. I hope you are finding stability and I hope you are found a good relationship with your specialist. Sending you extra strength! Hugs, Warrior! ❤️
Hi.. I am scl-70 positive with number 16.. Planning for pregnancy and on medication with hcq and ecospirin.. No other symptoms.. Pls advise
I’m only a patient, I have no medical knowledge other than my own journey. I’ve never been pregnant so I’m of no help, sorry. I recommend speaking with your Rheumatologist and OBGYN. They probably have great information for you. Congratulations on your growing family! ❤️
Were you able to get pregnant?
What is the name of your medication please. Thank you so much,
My current treatment for Systemic Sclerosis is Cellcept, Rituxan and daily low dose prednisone (steroids under careful supervision). That is what I’m taking for immune Suppression. I, of course, also have a lot of other medications that treat all the symptoms of the disease (GERD, SIBO, Raynaud’s, anemia, etc). ❤️
Mem, systemic sclerosis long time treatment after fulfill improve plz inform me.
Hi, I hope I’m understanding your questions correctly but I think you are asking about my treatment for Systemic Sclerosis. I’ve always followed the direction of my Rheumatologist when it comes to treatment. I’ve also seen a Scleroderma Specialist here in Los Angeles. I think having a Rheumatologist who specializes in Scleroderma is an important key to successful treatment. Hope that helps! ❤️
Is scl 70 positive enough for this diagnosis without outside simptoms?
Scleroderma is not a diagnosis made on blood work alone so a doctor will look for other symptoms of the disease. Seeing a Rheumatologist or Scleroderma Specialist is super important. Hope that helps! ❤️
I have 2 autoimmune diseases: celiac (which granted, with the right diet, is no problem) and antiphospholipids syndrome (which carries and elevated risk of stroke (which I've had), heart attacks, PE, etc... This is managed with blood thinners. I suspect I have more problems and have been looking into other autoimmune diseases which carry the other symptoms I've been experiencing...Came across scleroderma (have a lot of pain in my figures and other places on my skin..)
Edit: After my stroke they tested for high blood pressure, heart problems, and 2-3 rare diseases. APS was the one that came back positive. They had tested from FABRY which was the only other thing they thought would cause a stroke in a young person....The doctor told me if it came back was fabry he would be amazed since it was so rare, ended up being APS...
You have had a journey, Warrior. I’ve known young people that have had a stroke due to autoimmune disease. I also know that antiphospholipid syndrome is found as an overlap in autoimmune disease. If you haven’t yet seen a Rheumatologist, I would recommend a Rheumatology visit. Rheumatologists are such great investigators of “mystery illness”. If you are near a teaching hospital, I highly recommend a teaching hospital’s Rheumatology department. It sometimes is a wait to get in but usually totally worth it. I hope you find stability and answers. ❤️
i hv got scl70 = 1.41 and when i searched on google then got terrified please tell me what should do.
It is best to see a Rheumatologist as Scleroderma is not a diagnosis made on blood work alone. Also, SCL-70 does have a false positive probability so it is best to see a specialist. Google is outdated so take that info with a grain of salt. I’m sending you extra strength as you navigate this. Hugs! ❤️
I saw my Rheumatologist today, and she's not sure if I have SCL 70 but she wants me to try Hydroxychloroquine I'm not sure what to do. First she told me it was Rheumatoid now she thinks is SCL 70 😅😅😅😂😂 😂😅.😂😂😂😂
I’m so sorry your on this journey. Hopefully you feel comfortable with your Rheumatologist and the care you are receiving. I know things feel super confusing. Try to write down questions as they come up so you can bring them with you to your next appointment. SCL-70 is only a blood antibody. it isn’t a diagnosis so be sure to ask more questions. Scleroderma isn’t a diagnosis made on blood alone. I’m sending good vibes your way! Hugs! ❤️
Just watched one of your videos. Thank you. I’m sorry you’re going through some of the same challenges I’m facing. You sharing your story definitely helps someone like me. Take care of yourself.
Thank you so much for watching and commenting. I’m glad my story can help! Illness is not easy but it is nice to find a community with each other. I’m sending extra strength your way. Hugs, Warrior! ❤️
Hey, I have hashimoto's disease and after almost two years spent changing doctors I got told my scl70 was positive last week, I've been terrified ever since but this video really helped me understand that it isn't a death sentence, thank you for sharing your story💕
I know how scary SCL-70 looks and sounds especially on Google. But, I can definitely say Scleroderma varies from patient to patient and treatment options have really improved and changed for the better in recent years. I’m sending good vibes you’re way as you navigate this new blood work. Hugs, Warrior! ❤️
Thank you for sharing your story ❤I’ve had scleroderma for 23 years and have had heart lung eyes gi problems and more don’t give up keep fighting this shit disease
Thank you for your comment and for sharing your story with me. It is a sh*t disease…I totally agree! I’m sending extra strength back your way! ❤️
I was diagnosed 1-2 years ago with scleroderma. It started on my hands, I got a little discoloration and sensitivity to it and I thought this is the worst of it and I didn't take my medication because I didn't know the seriousness of the disease. Now it has expanded onto my lungs. I am scared but optimistic your longevity gives me hope. I will do whatever it takes to fight this off and I wish everybody else a healthy recovery.
I have Lupus, RA, and possibly scleroderma..thank you for sharing your story
One autoimmune disease is tough to have to deal with but multiple is super tough. I’m sending good vibes your way, Warrior friend! Thank you for watching and for your comment! ❤️
I'm amazed that doctors call this still a "rare" disease. I went many years without diagnosis because doctors only think in lupus, fibromyalgia 🤦🏽♀️
And even with a positive Centromere b antibody (in 2016) any doctor took that result seriously. I received the diagnosis finally few months ago in this 2022.
I'm very sad because time is so important and this has affected me a loooot. :-(((
If only doctors would take me seriously.
I hope you're feeling better.
Blessings 💗
I’m so sorry it took so long to find a doctor who would listen. I had that experience at the beginning of my autoimmune disease journey and it is truly frustrating. I’m sending good vibes your way that you continue to find help with your journey. And, I’m sending you extra strength. Hugs, Warrior!
@@ElainesAutoimmuneAdventure❤ Thank you! I'm struggling. With my kidney, stones and inflammation, intestines etc. 😢 Some sort of lung problem but I'm not sure what's going on with me.
Sending you big hugs. ❤
Thank you for sharing!
My problems my neck is dark what can I used product
Meant to say, Cell cept not salsa lol
Thank you very much for sharing your experience.
My pleasure! ❤️
Thank you 🙏
You’re welcome 😊
Just wondering if you have learned along your journey if a positive antisocial-70 antibodies test of 4.4 could not be scleroderma? If not, then what else might it be? I have zero skin issues, never had Reynolds, kidney, liver and lungs are normal. Super confused
I actually don’t know. I do know though that a Rheumatologist who has a specialty of Scleroderma would be great help. Hopefully you have been able to see a doctor who can explain things and help you. If not, try to see if you can get a referral to a Rheumatologist. I’m sorry I can’t be of more help. I’m sending good vibes your way. ❤️