Thank you so much for making this video, so I'm going to get my surgery pretty soon, and I am so nervous. I'm happy you're doing well. 😊😊God bless

Sugar, sweets, pizza and baked goods made of refined flour.

I thought I was the only one with UCTD because no one I know has it and it's not a common thing.

Thank you , I found this very useful information,

Fried foods

This is so similar to my story. I'm seeing a psychiatrist who is very supportive and knows that something is very wrong with me physically. Ironically he's my advocate! Rheumatology are USELESS, they have run blood tests and say nothing is wrong with me. My joints swell and ache, I'm exhausted, my toenails are falling off, my hair is falling out and I'm covered in rashes. I'm at my wits end.

I have been diagnosed with UCTD since 1998 after experiencing a grand mal seizure. Prior to this, I was very fatigued with a chronic cough, and intermittent swelling of hands or feet with sun exposure. I had these other sx's before 2 yrs before the seizure. I was tested for lupus but the tests were negative. My mother whom had lupus , contacted her rheumatologist and I got in to see him relatively soon and that same day he told me that I had UCTD. I have had inflammation in both my eyes and in the carotid artery. Then I got a new PCP recommended that I see the RA specialist at least once a year. Last year I had a tonsillectomy for inflammation of my r tonsil. Then I developed a raspy voice, taste bud changes food tasted very salty for six months whereas it only last for 2wks for most. Later this week, I will have a EGD done to help determined why food is still getting stuck in my throat. Also I suffer from tinnitus after getting the covid 19 shot; the had been a problem for 3yrs now. No cure for this.

My lumpectomy surgery last week, they took a 5 cm mass, and I coded during surgery.

Sorry to know you went through this. Expecting to go through a similar thing soon. 😓

Hi Laura. Do they know why you have osteoporosis? I have MCTD and osteopenia, probably osteoporosis by now since it’s been a few years since my bone density test, but I was told it is related to my MCTD.

Hello. I am so sorry you have been going through this. How is your UCTD?

I have recently been in severe pain in my upper arms and upper legs, I tested positive for a ANA and Sjogrens, I have a follow-up with rheumatologist on the 26th and see where I go from there. I totally understand the pain you go through, thank you so much for your videos❤

❤Thank you soo much . I totally understand what you're saying yes let's keep pushing forward. Yes I believe Advocating for myself and I'm so glad you did I hope anybody going through this battle Advocate for yourself everyone has my support. I pray doctors start listening more to use we know something just isn't right. I so agree with you no I don't want to be sick I'll rather be living m6 best life. And thank you so much take 1moment at a time I embrace. ❤

What you've described here is almost exactly like me. Every symptom you've had, I've had, but I do keep testing positive for Mixed Connective Tissue Disease (MCTD). I'm in Canada, and I wonder if that's the same thing as Undifferentiated CTD? I found your video when it popped up on my feed after looking for information on mixed connective tissue disease (MCTD), which is basically lupus, sclerosis, and polymyositis all wrapped up in one. It sounds the same, considering how you explain it. I have swelling in my legs right now, and my Reynauds is worse than it's ever been. I'm weak and confused while also living with severe short-term and long-term memory issues. I have swelling in my brain, so that's why I have a cognitive impairment, severe pain in my face, neck, and head, and I have numbness in many parts of my body. I'm also experiencing significant hair loss, but thankfully, my hair is like yours, thick and heavy, so it will take a lot of hair loss before I'm totally bald. It breaks my heart that my hair is falling out. I'm fifty-three, and I've never loved my hair more than I did before I got sick this time around. I have to write down everything, like my medication, or I won't remember when to take the next dose, ever. I was a creative writer, a trained journalist, and a rare disease group founder and rare disease patient advocate before all of this. Now I struggle to write anything, or advocate for myself, let alone anyone else. Some days, I repeat the same things repeatedly on the same page because I've forgotten I've already written that thought. The inflammation in my brain has caused another rare disease known as Trigeminal Neuralgia, and it causes extreme pain on the left side of my head, face, and neck, but also in the center of my brain. I currently remain undiagnosed and untreated, and as I've waited while our healthcare systems fall apart, I've had damage done to my brain, my heart, my gastric system, and I think my kidneys as well. I'm waiting for the kidney problem to be confirmed. I have a long history with MCTD. I was diagnosed with MCTD in 2016, and I was being treated, but my rheumatologist started losing his memory, so I was referred to a different doctor who disagreed with the first and took me off all of my meds. Since then, I was diagnosed with Lymphocytic Cutaneous Vasculitis through biopsy, but the rheumatologist dismissed that too. Now, I'm at my worst many years later, and I've been looking for a definite diagnosis for a year. My next ER visit will equal an urgent referral to a new rheumatologist because I don't have a doctor I can rely on for answers and referrals for anything. I have a type of Doctor, but everything I need is outside his scope of practice, and no doctors are accepting new patients here, so I'm stuck with what I have. This isn't my first rare disease. This is probably my fifth, or sixth, I think. I have Tarlov Cyst Disease, Adhesive Arachnoiditis, Hydrocephalus, Dysautonomia, and hypermobile Ehlers-Danlos Syndrome (hEDS) - another type of Connective Tissue Disorder that isn't autoimmune related. People wonder why I have so many rare diseases, and I think it's because I'm an IUD baby. My mother had an IUD when she became pregnant with me, and it stayed in the womb with me until after I was born. I just reached out to a researcher who studies IUD problems, and I'm hoping to find someone with experience in this type of thing so I can get some answers for me and my family. Many of my diseases have been passed on to my son and my three grandsons. Laura, thanks for your video. When it turned up on my feed randomly, I found it funny how much you reminded me of me when I was younger. I hope you're doing okay, and yes, I've subscribed to follow you. I look forward to seeing more of your videos. As you said, it's nice to know we're not alone and now know others like ourselves. Take care of you! How are you today? I hope you're doing better than when you recorded this video. Hopefully, I'll start doing better soon, too! I'm so tired of this, and like everyone else here, I want to get back to living a life I can enjoy and be proud of.

Hello! I just wanted to say thank you so much for your videos. My mom is having her lumpectomy this week and I am nervous for her and for the outcome. Your videos have helped ease my anxiety. I hope you’re doing well now❤

I love you ❤️

Thank you for sharing your faith in GOD. He will see us through. I had a stroke and I'm TRUSTING in THE ALMIGHTY GOD to see me through this.

I was diagnosed in 2011 wt this. Hv been struggling since, more bad days than good. But l will push through. ❤thks 4 this story of courage

May God grant you the best recovery and health for ever you so sweet ❤️❤️🤲🤲🤲🤲

Have tests for Lyme and co-infections been done? Effective tests, like found at Igenex or Infecto Lab? Fatigue, hair loss, thyroid, photosensitivity, extreme chemical sensitivity, and more. It baffles most doctors too.

I am watching this as someone with a lot of unexplained symptoms, and I went to your channel and looked at your list of videos, and when I saw one about your experience of nsrcissistic abuse, I just nodded. I have also experienced this as well. I hope you have gotten free of narcissists, as much as possible, perhaps including the doc who suggested your illness was "in your head". That one makes me really angry. They sometimes say that when they do not have an answer right away. Projection. Hope you are doing okay.

Gluten & MSG are the worst.

I’m from Italy, 34 years old finally this year I had my diagnosis (UCTD) and now, after 10 years of pain and fatigue I started a therapy for my immune system. It’s still bad days more often than good days, I’m so thin and without energy, all I want is to live my live ❤ yeah we need to be our first advocates and don’t give up! I probably have to endure all of this for another 2 years, but I really want to meet my future me, painless, lively and so grateful. So anyone who has red this comment, thank you for your time and attention and let me hug you! It’s gonna be better ❤

Hi Laura i have these infusion done every 6 months to, i just finished my chemo in November n i go go to the oncology day unit it takes bout 40 min start to finish. Wishing you all the best with yours

Well done my friend! Invincible and incredible!! :)

Am so glad u doing well

I had a blast & am glad u was able recharge a bit until city life took over again! ❤❤❤😢😢😊😊😊

gluten

Te amo por compartir tu historia de supervivencia estoy muy orgullosa de ti ❤

❤❤❤❤❤❤

I find the specialist fustrating They don't get it that we want to live normal lives . I don't want to be on their merry go round

Well I appreciate you having me on your vlog it was a wonderful experience. God bless you! MY best friend!

You're falling apart like me lol. Hope you are hanging in there! Let me know if you need to talk. ❤

You need to start following Dr. Eric Berg. He will educate you about disease and how to prevent it and cure it . MDs only treat symptoms 😊

❤❤❤ thank you for sharing!!!

Thank you for reminding me to not allow things get to me and set me off and just try to work through the stress of dealing with my health issues and coping with my personal life. You look great and I'm glad to hear your doing better and moving forward.

Thank you for your honest and open conversation and sharing this as I know how difficult this is and I'm right there too struggling. Thank you looking forward to more of your videos and reminding us to minimize our stress. Stay strong and blessed.

Thankyou ! I needed to hear this.

Thank you so much!

Thank you sounds like my life ❤❤❤❤❤❤❤❤

Great wisdom and authenticity.Thank you💛

I only JUST today learned that CTD by itself is now referred to as UCTD. And it's from your videos that I've learned this. I was diagnosed in 2009, and always thought Sjogren's was the more severe one and didn't do much research on CTD. Well. I've been down a really big rabbit hole today learning as much as I can. And I thank you for that. I don't know what my triggers are, so I'll have to pay closer attention for awhile.

Could you take prednisone and/or an immunosuppressant drug?

Sugar

Agreed 👍

I've been diagnosed with MCTD for 24 yrs and let me tell you it hit me hard!!! I have found over the years that you have to be your own doctor! I found that if I cut out sugar and breads of all kinds and just eat fruit n veggies and nuts and I take vitamins n supplements and have through the years. I can't stress enough let food be your medicine! I was bedridden for over 2 years n I started on Noni juice n Mangoxan (can find on line) and I started on those n between that and vitamins n supplements and teas that got me up and out of bed! It's been a long GOD has got me through n still is getting me through! I just want to let you all know please be your own doctor and research!!! The medical field is not there to get you better! They make money off of you! My profession was nursing and it was so hard to walk away n give up my job! One doctor helped me alot that I found 9n t v back then. Doug Kaufman! Know the cause! Check him out!!!I hope this helps. I went through heck and my Rheumatologist expected me to be dead back in april of 2002 but I prayed n prayed to my Heavenly FATHER cause I had just had a son n he was 2. Anyway I'm here still going! All the glory to GOD ALMIGHTY! 1 thing is to get off of as much of man made medicine!! Its poison. If you can find a holistic dr. Use a holistic approach. I have had several surgeries on my spine and b/c of that and fibromyalgia I am on some pain meds n muscle relaxer. Have been since 2002! I'm can sand walk sit without it due to spine issues. I need more surgeries but I refuse. I found out to late but our bodies are made to heal themselves! God gave us food to use as medicine as well as herbs n supplements! May GOD ALMIGHTY be with you all!!!!

I don’t typically “comment”, but I just want to tell you how absolutely grateful I am to have stumbled across your video. It’s 6am in Ohio…came here Dec 8 from Hawaii with my 3 yr old little girl bc I was referred to Cleveland Clinic and been living in an Airbnb for months during this whole process. I’ve been feeling like just packing up and flying back bc of the total dismissal and horrible care, and worse, No diagnosis. Im negative ANA, positive Raynauds, positive rash, positive (and HIGH histone levels for 3 years), inflammation, fatigue, arthritis, dry eyes/inflamed eyelids, at one point a dropping eyelid, hair loss, belly craziness…family history of Hashimotos (mom), RA (gramma), scleroderma (aunt), and my 20 year old has Celiac disease. My symptoms are being dismissed, as well as the histone autoantibodies and I’m not on any medications that would cause drug induced lupus. This is the worst experience and I’m devastated for those that are unwell and can’t get respectful, thoughtful and thorough medical care from the necessary doctors. This is a terrible way to learn how broken our system really is and THANK YOU for being that voice of inspiration to keep people advocating for help that’s necessary, warranted and deserved! I’ve listened to your video twice and have been crying the entire time…never thought I would say this but medical gaslighting is REAL. No, it’s not in my head, and what they fail to realize is how much worse that alone negatively impacts patients - physically. Like you said, no one “wants to be sick” and it’s crazy of THEM to think otherwise! I appreciate what you’re doing and please know how much you’ve touched my heart…and kicked me in the butt too! I’ll be sending some emails through my portal with the clinic to my rheumatologist and neurologist this morning to either get what is medically necessary for myself or be FIRING some damn doctors!! I was sent to supposedly one of the best hospitals in the country and I’m here to tell anyone that will listen, this is the WORST experience with this facility! But I don’t have to take their crap, and won’t! We DO know when something is wrong and I don’t care how many degrees is behind a name, no one knows more about my body than ME. …I needed to hear this today and I am SO glad I did. Nothing is ever by accident. Sending love, light and healing energy to you and all! 🙏💕

Hi how are you doing I think u should do heavy metal taste God bless you

Yesterday I got to know I have UCTD.