Thank you for your story! That was so brave of you and so helpful to others. I am a 63 year old lady and was just diagnosed with MCTD, including Lupus and your story was helpful to me and made me appreciate the good things that I do have. I am glad your pain level is manageable now. My God bless you and continue to guide you on your journey.
When you started tearing up I just wanted to hug you. You’re not alone! I totally understand what you mean, I am in the same case. Be strong, we will fight this ! ❤️❤️
This came by because I’m searching for answers myself. Thank you for sharing your experiences with us. It helps a lot of us I’m sure. My heart goes out to you! 🍀I hope and pray for the very best for you, as good as it gets. That you’ll find the strength to start a new day, every day. Sending you lots love from the Netherlands ❣️
I’m sorry you have this. It took me 30 years to get diagnosed. One doctor said “ munchaussen syndrome” and it was all downhill from there. Other doctors wouldn’t take me seriously after that. 30 years later, I found a doctor who did. I had actually started believing it was all in my head even with the severity of symptoms. My doc has lupus and he sent me to his rheumatologist. I’m so grateful…but so angry that it destroyed my life.
I can relate ! I am 47 been having symptoms since I was 23 and just got a rheumatologist appointment for October! All doctors I saw before made me feel like it was in my head and recently I had one nurse practitioner who took me serious to run test and she saw I had ANA and other stuff that suggested to her I needed further help and now she has left the practice so I hope I find someone like her to take me serious.
Did you say you have Munchaussen Synndrome? That 's when you believe that your child is sick and think that you can fix it. But you are actually causing it.
This is what I'm going through. My doctor yesterday turned around to me and said, " I believe you have symptoms, but I don't think there's anything wrong with you. Some things can't be explained." I mean, they didn't even look to see if I had a trapped nerve in my shoulder or neck which is where a lot of my pain comes from. I came out the doctors office and burst into tears because my symptoms are just getting worse by the day and no one believes me. I've had to apply for private health care because the NHS won't even look at me. The muscle spasms are getting worse, my eye hurts and is constantly twitching and the itching and inability to swallow properly is just so difficult to deal with alongside the random days where I can't even turn around in bed due to pain. It feels like my spine is crumbling away.
I give you so much props for doing this video. I was diagnosed with an autoimmune disease when I was young. Limping on crutches or using a wheelchair for months at a time, nobody understood. I didn’t either 🥴 So inspiring!
Thank you for sharing your story. I was diagnosed in September 2023 & everything you said I went through as well. The being tired just taking a shower to wash hair is exactly what I was feeling. I am under medication, but it's a slow process cause we are still learning what type of Scleroderma I have. But I do have MCTD as well. It's good to know I'm not alone & there are others who understand. Thank you! God Bless you on this journey. 🙏
So cool to hear what you’ve overcome and the irreplaceable wisdom and strength you’ve gathered through your journey, Amanda. You are an inspiration and I hope anyone who’s going through or has gone through what you have, finds comfort in knowing they’re not alone and there is a light and the end of the tunnel 🙌🏼❤️ Thank you for sharing your story 🙏🏻
I understand this all too well😢 MCTD started with hypothyroidism, carpal tunnel, raynauds, then came the biopsy showing polymyositis,lupus and scleroderma…. I began to have shortness of breath and could barely walk up steps without being out of breath. I found out that my immune system attacked my lungs I was diagnosed with ILD interstitial lung disease.. which is pulmonary fibrosis. I was devastated when I googled it. It stated that I had 3 to 5 yrs to live. But I found out that is old data. It is irreversible and incurable. I’m now on 02 oxygen. I still work a full time job, but like you said it’s very hard and difficult. As far as the lungs it’s been 7yrs since diagnosis. They say I have kidney disease. But through it all I’m trusting the process. ❤❤#GodsPlan
I’m 17, female and I feel the same feelings as you from the diagnosis. Your story was also similar to mine, thank you for sharing your story it makes me feel like im not the only one.
I’m sorry for your situation. I also have MCTD, and got diagnosed in March. My doc put me on the AIP diet. It’s so important to try to heal your gut with autoimmune diseases.
I understand. I sympathise with everything you said and felt. I collapsed Oct 2021. The day before there was nothing at all wrong with me. My life changed forever that day. I dont know why im still suffering so badly after nearly 3 years though when i hear others are managing better and can work, even part time (despit their struggles as i know theres no cure).
I just stumbled upon your video. Thank you for making this video. I was just diagnosed yesterday with mctd/Raynauds disease. Still a shocker. A mixed ball of emotions. Once again thank you.
I’m sorry to hear that you’ve recently been diagnosed. I know it’s such a tough and confusing situation to be in. Don’t let that get to you. Stay strong and keep fighting. Know that there are many us out here that face similar symptoms, feel free to reach out if you need anyone to talk to!
I’m 36 years old with 2 boys and I have MCTD and that cause me ILD pulmonary fibrosis. I’m taking a lot of medications and this week I’m going to get my second round of Rituxan infusions. God bless you 🙏🏻
I have been diagnosed with Hashimoto's & Lichens disease & MCTD having 3 autoimmune disease really takes a toll on my body on top of having stenosis of the neck and to brain tumor my body is in pain 24/7........ I am glad that I came across your video tho it really touched me when you said that you were in the doctor's office and your mind stopped when you heard that you had a diagnosis that's exactly how I felt when they told me that I had MCTD I just got this ringing in my ears so I could relate to everything that you said please give us an update and let us know how you're doing thank you so much sending prayers your way 💜
So brave of you to step out of your comfort zone and sharing your story. You will have people who will appreciate your story and want to follow your journey. LOVE the video Amanda ❤️ I pray that your channel grows so much!
Thank you for making this video! I was diagnosed with MCTD when I was 14 years old (I’m 22 now) and it makes me feel less alone knowing that other people experience the same things I do. 🙏🏼
I was diagnosed with sjogrens syndrome in 2017 and now in august have also now been diagnosed with Lupus and have a feeling I may have MCTD. I am in constant pain. and totally understand when you say i look ok on outside but inside is a different story.
Hola mija 💖 son muchas las palabras que quiero desirte la primera es que te quiero muchisimo mi chiquilla .que si desde que me dijiste sobre tu enfermedad no he tenido el valor como madre de conversar de esto pues calladamente me llenaba de tristeza de dolor llorando a solas dia tras dia . Con el tiempo asta el dia de hoy mija he aprendido mucho de ti mi chiquilla estoy super orgullosa de ti como mi hija como madre que heres y esposa eres super espesial muy almirada de ti preciosa super trabajadora y nu te das por vencida me has enseniado mucho mas aun mirandote muy fuerte positiva super activa mi chiquilla .todo con el poder de Dios es posible mi chula te quiero muchisimo y que bien que compartes tu historia primero Dios podras alludar a otras personas en la misma situation mi chiquilla te aplaudo y repito estoy super orgullosa de ti mi chula sigue adelante con la alluda de Dios y le doy gracias A tu esposo mi yerno angel por ser tan buen esposo y padre por todo su apoyoey paciencia y conprencion y por cuidar de ese hermoso mateo mi nieto ...su bendicion de Dios . Abrazos mi chula y arriba arriba .les quiere tu Mami....🙏🙏🙏🙏🌹🌹🌹♥️♥️♥️♥️💯💯💯💯💜💜💜💜💜💜💜💜💜
Hi Amanda, Stay strong I know it's so easy to say it when you have MCTD & many other syndromes I have them all people don't understand when you try to explain I have been accuse of faking it my own people don't believe me My doctor had me stop my meds for a whole year cause toxics I totally feel so weak & tired no energy can't wait to go back to my hydroxy Like I said stay strong baby I am almost 59 years old I have been with MCTD LUPUS REYNAUDS .for my whole adulthood...
I am 21 & your story and feelings are to a t of how my story is. I was diagnosed a few months ago, and it’s so hard but this makes me not feel alone🙏🏻🥲
Sorry to hear about your diagnosis. I know it’s hard. 😐 but I’m really glad this helps you. There’s other ways to get support if you need it. Social media is a great way to connect with people who are in similar situations. If you have Facebook, there are some lupus and MCTD support groups. There is also an app called Inspire where you can enter your diagnosis and it’ll show you posts from other people who have similar symptoms so you can be in touch and have that support. I hope things turn out ok for you. Stay strong ! 🤍
Hello. Glad I came across your video. I worked retail for 20 years when my symptoms were to much to bare. Took me about 3 years to get dignosed with MCTD/SLE/Pyloymoystis and hypothyriodisum. I totally understand. I quit my job. I cant do the things I used to. Its so hard to deal with and on top of it we dont look sick. Ive learned to really take things day to day. Rest when I have to. Eat better and stretch /yoga. Good Luck. We got this.
I m diagnosed with mctd months ago. And I had the worst symptoms alopecia , butterfly rash and muscles pain 🥲🥲 I can't go outside and enjoy life It's so frustrating and I don't know about its prognosis..
Girl got my diagnosis almost 3 years ago… I had been blown off by doctor saying I had fibromyalgia, and that I had arthritis and all kinds of stuff… And it’s more than frustrating. It’s absolutely infuriating.
I am sorry you went through auto immune disease, I can relate to you, I have lupus. Life is hard. Try anti inflammatory diet , lots of fruits and veggies. it will help.
Thank you!!! Those are great suggestions. I’ve recently learned that diet has a whole lot to do with managing symptoms. It has helped tremendously. Hope you’re doing ok. 🤍
I have mixed connective tissue disease. My flares consist of extreme fatigue and my joints/bones are always hurting. I found out I had this because i started with pain in my fingers. When i got my results all i heard was lupus and freaked out. Sorry you are going through this
Thank you!! I know that exact feeling. I didn’t know what to think when I heard it at first, then it sunk in and I was scared. You’re not alone tho! I hope that helps with peace of mind. Stay strong. Hope your symptoms lessened. 🤍
Sorry to respond so late. There seemed to be a glitch with my video comments. I tried several medications in the past. I’m currently taking plaquenil and it didn’t work for the first 2 months and then it slowly began to work. It’s the only medication I take currently and it’s help so much. Also, watching what I eat and making sure I get enough physical activity has helped. Hope you’re symptoms have lessened now. 🤍
I 100% understand what you mean when you say “it was a different kind of tired” I have 4 boys under 4 years old at one point so I KNOW what it’s like to be tired. This is different. Rheumatologist said not autoimmune. Went to see immunologist. Still no diagnosis.
Hello Amanda, You are such a sweet girl and I can really feel for you. I was diagnosed about 5 weeks ago and I am still so confused about MCTD. I must say I haven't had to use crutches and so sorry that you had too. My doctor said there isn't any medication to help right now. Can you please tell me what medicine you are taking. I can ask my doctor about it.
Hi Diane. Thank you so much for your comment. I’m sorry to hear about your diagnosis. I hope that you’re able to find the right treatment that works for you. I’m currently taking hydroxychloroquine (plaquenil), which I’ve been taking for about 2 years now and has really helped settle my flares. I recently started taking Imuran, about 4 weeks ago. I’ve noticed subtle improvements, but I’ll have to wait a little longer to tell how much it’s helped. I could share an update with you in a few months and let you know how it’s helped me. I know that every case is different, but maybe you could inquire with your doctor on the plaquenil. Many people with lupus/MCTD take that. Wishing you well and a very happy new year. ✨
My doctor told me that there wasn’t any medication for me, and today I hear you saying you are on medication and that your energy is much better…I love in a small community, we don’t have specialists here. I’m 72 yrs old, I was diagnosed with Lupus at the age of 39, then at the age of 52, I was working as cashier, I was so exhausted at about 2 hours into my shifts . That I had to quit working, I had gone to see a doctor to tell him how exhausted I was , so he gave me one month off, but soon after going back, I was still feeling exhausted, I went again to see him, he gave me another 3 weeks off , I was still too tired to do my shifts, so I simply quit my job. Now I’m in so much pain every day, I can only take Tylenol for muscles pain and Advil 3 times a day, it doesn’t take all the pain away, but that’s all my doctor said I could take. There’s no cure for Lupus or MCTD . I have a cleaning lady who comes clean my house every week, my husband has COPD , so we help each other with household chores, I do online grocery shopping.. I wish I could go out shopping, but I’m in too much pain for that
"Corticosteroids are usually effective, especially when the disease is diagnosed early. Mild cases can be treated with nonsteroidal anti-inflammatory drugs (NSAIDs), antimalarial drugs (such as hydroxychloroquine or chloroquine), or very low doses of corticosteroids"
That’s what I was wondering. This is her only video. I have looked on social media and can’t find her. I hope she is better and has found some treatments that help. She is young. I have several autoimmune diseases as well as POTS which is a form of Dysautonomia and I understand how difficult it is to function normally. @amandarenard
I’m doing okay! Some days are better than others but I always try to stay positive. I’m blessed to be alive! 🤍 I plan to share an update soon. 😊 thank you both for watching my video and listening to my story.
@@amandaberard7949 Of course!! I’ve had this for 20 years and it was so bad in the beginning. Finally got a handle on it with an occasion of times when it would act up!! And lately, after making a change in a medication my dr suggested, it was horrible for my POTS and I feel awful now and battling to get back where I was. So it is something to deal with for a lifetime, and we have to be careful as to what we do that might cause a setback. But we keep going! Looking forward to your update.
I got it to, first time the dr told me she was a B, I was crying in pain asking questions , she yelled at me said I don't know! I never went back, 2015 I was bed ridin w it 2 years, I know how it hurts to hold arms up, shampooing hurt so bad, I tried hanging a shower curtain and coukdnt , I was like wth! I been to other dr , they have no sympathy, so 4 years I justctried treating the symptoms myself, I just now found something thats really helping, I can lift my arms for the first time since 2015
Hello. I also have mctd. I'm so bad off too. I can so relate. I'm alone in this battle. Feel free to message me on Facebook Holly Carpenter. We can connect and talk. Battle through together warrior 💪❤
Not sure if I found you or not, but the profile I found doesn’t allow me to add you. Can you try searching me with Amanda Berard-Ramirez or Here’s my link facebook.com/amanda.berard.73
Thank you for your story! That was so brave of you and so helpful to others. I am a 63 year old lady and was just diagnosed with MCTD, including Lupus and your story was helpful to me and made me appreciate the good things that I do have. I am glad your pain level is manageable now. My God bless you and continue to guide you on your journey.
❤
When you started tearing up I just wanted to hug you. You’re not alone! I totally understand what you mean, I am in the same case. Be strong, we will fight this ! ❤️❤️
This came by because I’m searching for answers myself. Thank you for sharing your experiences with us. It helps a lot of us I’m sure. My heart goes out to you! 🍀I hope and pray for the very best for you, as good as it gets. That you’ll find the strength to start a new day, every day. Sending you lots love from the Netherlands ❣️
I’m sorry you have this. It took me 30 years to get diagnosed. One doctor said “ munchaussen syndrome” and it was all downhill from there. Other doctors wouldn’t take me seriously after that. 30 years later, I found a doctor who did. I had actually started believing it was all in my head even with the severity of symptoms. My doc has lupus and he sent me to his rheumatologist. I’m so grateful…but so angry that it destroyed my life.
I can relate ! I am 47 been having symptoms since I was 23 and just got a rheumatologist appointment for October! All doctors I saw before made me feel like it was in my head and recently I had one nurse practitioner who took me serious to run test and she saw I had ANA and other stuff that suggested to her I needed further help and now she has left the practice so I hope I find someone like her to take me serious.
Did you say you have Munchaussen Synndrome? That 's when you believe that your child is sick and think that you can fix it. But you are actually causing it.
This is what I'm going through. My doctor yesterday turned around to me and said, " I believe you have symptoms, but I don't think there's anything wrong with you. Some things can't be explained." I mean, they didn't even look to see if I had a trapped nerve in my shoulder or neck which is where a lot of my pain comes from. I came out the doctors office and burst into tears because my symptoms are just getting worse by the day and no one believes me. I've had to apply for private health care because the NHS won't even look at me. The muscle spasms are getting worse, my eye hurts and is constantly twitching and the itching and inability to swallow properly is just so difficult to deal with alongside the random days where I can't even turn around in bed due to pain. It feels like my spine is crumbling away.
What did you do to ease the pain when ibuprofen or aspirin or tylenol did not work
I give you so much props for doing this video. I was diagnosed with an autoimmune disease when I was young. Limping on crutches or using a wheelchair for months at a time, nobody understood. I didn’t either 🥴 So inspiring!
Thank you for sharing your story. I was diagnosed in September 2023 & everything you said I went through as well. The being tired just taking a shower to wash hair is exactly what I was feeling. I am under medication, but it's a slow process cause we are still learning what type of Scleroderma I have. But I do have MCTD as well. It's good to know I'm not alone & there are others who understand. Thank you! God Bless you on this journey. 🙏
So cool to hear what you’ve overcome and the irreplaceable wisdom and strength you’ve gathered through your journey, Amanda. You are an inspiration and I hope anyone who’s going through or has gone through what you have, finds comfort in knowing they’re not alone and there is a light and the end of the tunnel 🙌🏼❤️ Thank you for sharing your story 🙏🏻
I understand this all too well😢 MCTD started with hypothyroidism, carpal tunnel, raynauds, then came the biopsy showing polymyositis,lupus and scleroderma…. I began to have shortness of breath and could barely walk up steps without being out of breath. I found out that my immune system attacked my lungs I was diagnosed with ILD interstitial lung disease.. which is pulmonary fibrosis. I was devastated when I googled it. It stated that I had 3 to 5 yrs to live. But I found out that is old data. It is irreversible and incurable. I’m now on 02 oxygen. I still work a full time job, but like you said it’s very hard and difficult. As far as the lungs it’s been 7yrs since diagnosis. They say I have kidney disease. But through it all I’m trusting the process. ❤❤#GodsPlan
I’m 17, female and I feel the same feelings as you from the diagnosis. Your story was also similar to mine, thank you for sharing your story it makes me feel like im not the only one.
You definitely aren’t alone. I’m glad this helps. Stay strong. Hope you’re doing ok.
Thanks for sharing! I have a similar autoimmune and it’s awesome that you educate people and create awareness. Stay strong!
I’m sorry for your situation. I also have MCTD, and got diagnosed in March. My doc put me on the AIP diet. It’s so important to try to heal your gut with autoimmune diseases.
Are you still on the diet and has it changed anything? My doctor prescribed me hydroxychloriquine but I stopped after 2 days.
@@jessv6319look into microdoseing sylsibin
I understand. I sympathise with everything you said and felt.
I collapsed Oct 2021. The day before there was nothing at all wrong with me. My life changed forever that day.
I dont know why im still suffering so badly after nearly 3 years though when i hear others are managing better and can work, even part time (despit their struggles as i know theres no cure).
I just stumbled upon your video. Thank you for making this video. I was just diagnosed yesterday with mctd/Raynauds disease. Still a shocker. A mixed ball of emotions. Once again thank you.
I’m sorry to hear that you’ve recently been diagnosed. I know it’s such a tough and confusing situation to be in. Don’t let that get to you. Stay strong and keep fighting. Know that there are many us out here that face similar symptoms, feel free to reach out if you need anyone to talk to!
I’m 36 years old with 2 boys and I have MCTD and that cause me ILD pulmonary fibrosis. I’m taking a lot of medications and this week I’m going to get my second round of Rituxan infusions. God bless you 🙏🏻
Mi IG is ...d.cintron
Im sorry to hear that you’re going through that. I hope your medications are helping manage everything. Bless you too. 🤍
I have been diagnosed with Hashimoto's & Lichens disease & MCTD having 3 autoimmune disease really takes a toll on my body on top of having stenosis of the neck and to brain tumor my body is in pain 24/7........ I am glad that I came across your video tho it really touched me when you said that you were in the doctor's office and your mind stopped when you heard that you had a diagnosis that's exactly how I felt when they told me that I had MCTD I just got this ringing in my ears so I could relate to everything that you said please give us an update and let us know how you're doing thank you so much sending prayers your way 💜
So brave of you to step out of your comfort zone and sharing your story. You will have people who will appreciate your story and want to follow your journey. LOVE the video Amanda ❤️ I pray that your channel grows so much!
Thank you for making this video! I was diagnosed with MCTD when I was 14 years old (I’m 22 now) and it makes me feel less alone knowing that other people experience the same things I do. 🙏🏼
Thanks for watching! I’m glad you don’t feel so alone. There are many of us out there! Hope you’re well. 🤍
we all hope you will make an update when you feel like it :) thanks for this info-super helpful!
Proud of you! Awesome...and thanks for sharing Amanda! 🤙🏽
I was diagnosed with sjogrens syndrome in 2017 and now in august have also now been diagnosed with Lupus and have a feeling I may have MCTD. I am in constant pain. and totally understand when you say i look ok on outside but inside is a different story.
You seam like a very good person from inside. I hope you are doing okey. I’m praying for you 🙏🙏
Thank you so much for your kind words. Prayers for you as well. 🙏🏼🤍
Hola mija 💖 son muchas las palabras que quiero desirte la primera es que te quiero muchisimo mi chiquilla .que si desde que me dijiste sobre tu enfermedad no he tenido el valor como madre de conversar de esto pues calladamente me llenaba de tristeza de dolor llorando a solas dia tras dia . Con el tiempo asta el dia de hoy mija he aprendido mucho de ti mi chiquilla estoy super orgullosa de ti como mi hija como madre que heres y esposa eres super espesial muy almirada de ti preciosa super trabajadora y nu te das por vencida me has enseniado mucho mas aun mirandote muy fuerte positiva super activa mi chiquilla .todo con el poder de Dios es posible mi chula te quiero muchisimo y que bien que compartes tu historia primero Dios podras alludar a otras personas en la misma situation mi chiquilla te aplaudo y repito estoy super orgullosa de ti mi chula sigue adelante con la alluda de Dios y le doy gracias A tu esposo mi yerno angel por ser tan buen esposo y padre por todo su apoyoey paciencia y conprencion y por cuidar de ese hermoso mateo mi nieto ...su bendicion de Dios . Abrazos mi chula y arriba arriba .les quiere tu Mami....🙏🙏🙏🙏🌹🌹🌹♥️♥️♥️♥️💯💯💯💯💜💜💜💜💜💜💜💜💜
You’re amazing!! Thanks Amanda ❤️
Hi Amanda,
Stay strong I know it's so easy to say it when you have MCTD & many other syndromes
I have them all people don't understand when you try to explain I have been accuse of faking it my own people don't believe me
My doctor had me stop my meds for a whole year cause toxics I totally feel so weak & tired no energy can't wait to go back to my hydroxy
Like I said stay strong baby I am almost 59 years old I have been with MCTD LUPUS REYNAUDS .for my whole adulthood...
I am 21 & your story and feelings are to a t of how my story is. I was diagnosed a few months ago, and it’s so hard but this makes me not feel alone🙏🏻🥲
Sorry to hear about your diagnosis. I know it’s hard. 😐 but I’m really glad this helps you. There’s other ways to get support if you need it. Social media is a great way to connect with people who are in similar situations. If you have Facebook, there are some lupus and MCTD support groups. There is also an app called Inspire where you can enter your diagnosis and it’ll show you posts from other people who have similar symptoms so you can be in touch and have that support. I hope things turn out ok for you. Stay strong ! 🤍
Hello. Glad I came across your video. I worked retail for 20 years when my symptoms were to much to bare. Took me about 3 years to get dignosed with MCTD/SLE/Pyloymoystis and hypothyriodisum. I totally understand. I quit my job. I cant do the things I used to. Its so hard to deal with and on top of it we dont look sick. Ive learned to really take things day to day. Rest when I have to. Eat better and stretch /yoga. Good Luck. We got this.
Same here, diagnosed 5 years ago. Pain all over
Glad I found your channel. Would love to hear an update and see how you're doing💕💕
Thank you. 🤍 I’ll give an update soon.
Don't worry mctd is a manageable syndrome..Nothing to worry..Diet is important..Stay happy..God bless you
I m diagnosed with mctd months ago. And I had the worst symptoms alopecia , butterfly rash and muscles pain 🥲🥲
I can't go outside and enjoy life
It's so frustrating and I don't know about its prognosis..
Prognosis is 10 to 15 years after diagnosis. But I believe things will change and that's not the right prognosis. Praying for everyone.
Girl got my diagnosis almost 3 years ago… I had been blown off by doctor saying I had fibromyalgia, and that I had arthritis and all kinds of stuff… And it’s more than frustrating. It’s absolutely infuriating.
Thank you for sharing! ❤
Thank you for watching! 🤍
You are amazing! Thank you for sharing.
Thank you for this, I was just diagnosed with MCTD 2 weeks ago.
I’m sorry to hear about your diagnosis. I hope things get better for you. Hang in there! 🤍
I am sorry you went through auto immune disease, I can relate to you, I have lupus. Life is hard. Try anti inflammatory diet , lots of fruits and veggies. it will help.
Thank you!!! Those are great suggestions. I’ve recently learned that diet has a whole lot to do with managing symptoms. It has helped tremendously. Hope you’re doing ok. 🤍
I have mixed connective tissue disease. My flares consist of extreme fatigue and my joints/bones are always hurting. I found out I had this because i started with pain in my fingers. When i got my results all i heard was lupus and freaked out. Sorry you are going through this
Thank you!!
I know that exact feeling. I didn’t know what to think when I heard it at first, then it sunk in and I was scared. You’re not alone tho! I hope that helps with peace of mind. Stay strong. Hope your symptoms lessened. 🤍
What med did they put you on that's working? My Dr. Put me on hydroxychloroquine and its not helping much.
Sorry to respond so late. There seemed to be a glitch with my video comments. I tried several medications in the past. I’m currently taking plaquenil and it didn’t work for the first 2 months and then it slowly began to work. It’s the only medication I take currently and it’s help so much. Also, watching what I eat and making sure I get enough physical activity has helped. Hope you’re symptoms have lessened now. 🤍
I 100% understand what you mean when you say “it was a different kind of tired”
I have 4 boys under 4 years old at one point so I KNOW what it’s like to be tired.
This is different. Rheumatologist said not autoimmune. Went to see immunologist. Still no diagnosis.
Hello Amanda, You are such a sweet girl and I can really feel for you. I was diagnosed about 5 weeks ago and I am still so confused about MCTD. I must say I haven't had to use crutches and so sorry that you had too.
My doctor said there isn't any medication to help right now.
Can you please tell me what medicine you are taking. I can ask my doctor about it.
Hi Diane. Thank you so much for your comment. I’m sorry to hear about your diagnosis. I hope that you’re able to find the right treatment that works for you. I’m currently taking hydroxychloroquine (plaquenil), which I’ve been taking for about 2 years now and has really helped settle my flares. I recently started taking Imuran, about 4 weeks ago. I’ve noticed subtle improvements, but I’ll have to wait a little longer to tell how much it’s helped. I could share an update with you in a few months and let you know how it’s helped me.
I know that every case is different, but maybe you could inquire with your doctor on the plaquenil. Many people with lupus/MCTD take that.
Wishing you well and a very happy new year. ✨
My doctor told me that there wasn’t any medication for me, and today I hear you saying you are on medication and that your energy is much better…I love in a small community, we don’t have specialists here. I’m 72 yrs old, I was diagnosed with Lupus at the age of 39, then at the age of 52, I was working as cashier, I was so exhausted at about 2 hours into my shifts . That I had to quit working, I had gone to see a doctor to tell him how exhausted I was , so he gave me one month off, but soon after going back, I was still feeling exhausted, I went again to see him, he gave me another 3 weeks off , I was still too tired to do my shifts, so I simply quit my job. Now I’m in so much pain every day, I can only take Tylenol for muscles pain and Advil 3 times a day, it doesn’t take all the pain away, but that’s all my doctor said I could take. There’s no cure for Lupus or MCTD . I have a cleaning lady who comes clean my house every week, my husband has COPD , so we help each other with household chores, I do online grocery shopping.. I wish I could go out shopping, but I’m in too much pain for that
I was put on Plenquil for MCTD/SLE and I'm on Cymbalta for anxiety which has shown to help pain too.
I am going through the same things but I get not get a doctor to diagnose me. What medication do you take?
"Corticosteroids are usually effective, especially when the disease is diagnosed early. Mild cases can be treated with nonsteroidal anti-inflammatory drugs (NSAIDs), antimalarial drugs (such as hydroxychloroquine or chloroquine), or very low doses of corticosteroids"
I wonder how you are right now. I hope you’re doing well now and in remission.
Have you done mycotoxins blood test?
God bless you 🙏🏼 hope you’re doing well
Thank you for sharing your story Amanda. Can I ask you more queries on this?
Yes! Of course.
@@amandaberard7949 Thank you.
Let me ask you in Instagram.. Thanks
❤️❤️❤️❤️
♥️
What is the medicine they treated you with?
I’ve tried several. I currently take plaquenil and imuran for lupus.
Does anyone experience flare ups in their head
Yes! Feels like a pick axe
Hey I am MCTD warrior ...can u tell me now u r condition ..please parayers with u
How you doing now?
That’s what I was wondering. This is her only video. I have looked on social media and can’t find her. I hope she is better and has found some treatments that help. She is young. I have several autoimmune diseases as well as POTS which is a form of Dysautonomia and I understand how difficult it is to function normally.
@amandarenard
I’m doing okay! Some days are better than others but I always try to stay positive. I’m blessed to be alive! 🤍 I plan to share an update soon. 😊 thank you both for watching my video and listening to my story.
@@amandaberard7949 Of course!!
I’ve had this for 20 years and it was so bad in the beginning. Finally got a handle on it with an occasion of times when it would act up!! And lately, after making a change in a medication my dr suggested, it was horrible for my POTS and I feel awful now and battling to get back where I was. So it is something to deal with for a lifetime, and we have to be careful as to what we do that might cause a setback. But we keep going! Looking forward to your update.
I got it to, first time the dr told me she was a B, I was crying in pain asking questions , she yelled at me said I don't know! I never went back, 2015 I was bed ridin w it 2 years, I know how it hurts to hold arms up, shampooing hurt so bad, I tried hanging a shower curtain and coukdnt , I was like wth!
I been to other dr , they have no sympathy, so 4 years I justctried treating the symptoms myself, I just now found something thats really helping, I can lift my arms for the first time since 2015
Why is so many woman getting lupus I'm hearing so many cases!! It must be some sort of virus that starts it off! It's not fair God bless you 💕
Hello. I also have mctd. I'm so bad off too. I can so relate. I'm alone in this battle. Feel free to message me on Facebook Holly Carpenter. We can connect and talk. Battle through together warrior 💪❤
You are amazing!!! Thanks for reaching out and offering support. I will add you shortly. ☺️ stay strong. 🤍🤍
Thank you. You too. I'll be on the look out 💕
Not sure if I found you or not, but the profile I found doesn’t allow me to add you. Can you try searching me with Amanda Berard-Ramirez or Here’s my link
facebook.com/amanda.berard.73
I added you. Just waiting for you to accept 💕
Thank you so much for your video, I was diagnosed 2 years ago, dream job, feeling drained, you’ve made me feel so much better 🤍🤍🤍🤍
I hope things have been going better for you. Remember to put your health first! Stay strong. 🤍