Hi Dr Girnita. You should contact Professor Johannes Nossent here in Perth, Western Australia. My husband was his patient. He had Disabling Pansclerotic Morphea. My husband lost his life to the disease last year on the 18th of August 2023. The disease hit him in November 2014, but he was only diagnosed approximately 16 to 18 months later. He was 54 when the disease manifested, and he was 63 when it ended his life. Such a cruel disease 😔
Thank you for this! I was actually diagnosed at a Scleroderma Clinic in Chicago at Northwestern. I was diagnosed July 8, 2020. I have systemic sclerosis. My Paternal Aunt passed away from this disease in October 2020. They always tell me that everyone is different. I run a fever most days but this is not common. My Rheumatologist has resigned that this is what my body does. I have severe Reynauds with ulcers frequently and I also have the hemorrhaging in the nail beds constantly. My entire GI tract has been affected. I would highly recommend anyone with this disease since it is so rare, to go to a Scleroderma specialty clinic, since the clinics have different specialists on staff for different body parts affected. I drive 6 hours twice a year and then do telemed appointments on the off months. Again, thank you for this presentation. You did very well!
Thank you very much for this helpful information. I was diagnosed with this disease last year. My dr is very good but hasn’t really talked to me much about this disease. I had lost my identical twin sister several months before going to this new Rheumatologist in a new town and I believe she was so compassionate she didn’t want to give me more sad news. My twin was diagnosed with IPF and I truly believe now that she had this same condition. I need so much information about this autoimmune disease and treatment. I’m starting to feel like my autoimmune disorder is going at a very rapid pace. I’m afraid before I know it I will be completely in pain and bedridden. I want to fight this as long as I can.
@@susanashworth-mb1hiI’m so sorry that you have been diagnosed with this disease. The only information I get is from listening to this Dr and her ever so patiently teaching of this disease. My primary care Dr and my rheumatologist have yet to discuss just watch my blood work come back worse every few weeks. I don’t know what to do. I’m not feeling very good since January and I’m scared. I will pray for you.
@@rheumatologistoncallI would like to become one of your patients if possible. How do I find out where you practice or where some of your offices are located. I’m getting scared and I feel I need to move faster than my Dr is moving. While trying to deal with this new pain I’m suffering from my back. I had surgery on back last year but feel it’s starting to get extremely painful again.
Thank you for making this video. I was diagnosed this May 2024 with Scleroderma. I show no outward skin signs and it seems to be affecting my lungs only at this time. I have recently quit smoking. I have a great team of doctors helping me. You explained everything so well.
@@duncanneal5278 🙏🙏🙏 I pray for healing… I have some sort of restriction not obstruction going on w my lungs- it is scary and uncomfortable- praying for all healing
I was diagnosed with CREST scleroderma about 15 years ago and just recently started getting the calcinosis bumps on 2 of my fingers. Some are painful and are like blisters. Is there a treatment for this? I have been to several Rheumatologists who are not too informative. Unfortunately your program doesn't cover my state. Thank you so much for this channel.
I'm really sorry to hear about your experience with CREST scleroderma and the painful calcinosis bumps. It’s frustrating when you feel like you’re not getting the answers you need.
Thank You Dr. G. due to my scleroderma my stomach is not moving also part of esophagus. If I am in this case what is next organ and how many years I could live? I have skin problem and sometimes 7 fingers top is all white... should I prepare everything? Please let me know.
Have you ever heard of any cases of limited systemic sclerosis being aggravated by physical trauma, such as a fall? I fell backward onto both hands and fractured my left pinky. The tip of the fractured finger developed painful, thickened skin, like a callus, which I couldn't figure out. Over the next weeks, several other fingers on both hands developed swelling, Raynauds, and ulcers (right index finger severe). In 3 months I was diagnosed with limited systemic sclerosis, after never having these issues before the fall.
Excellent presentation. I have been on the road to this DX for a few years now. The latest symptoms that have pointed to Systemic Sclerosis have been swelling and pain in hands and toes, nail changes, Telangiectasias, Barret's esophagus, dysphasia, and joint pain. Pretty much everything but calcinosis, but who knows that might be next. I've had a DX of Polyfibromatosis syndrome for 8 years so I think that's going to be an overlap. Going to see a Rheumatologist in a few months. The wait is due to as the short supply of that specialty in my area. I'm documenting changes with photos to help with the DX. I hope I'm in time to do something to slow it down.
i have had the diffuse SSc for 3years now with all of the above problems...i was put on. prednisone and Azathioprine plus many other meds to help with the gass and pulmonary hypertension...i had some improvements and gradually reduced zhe dose to.a maintenance dose oflet i have now started getting crazy skin thickening...i don't know what to do
i have ac8 homogenous nucleolar pattern ana 1:100 weak positive and sm/rnp weak positive antibody without sm and positive antiphospholipids lupus coagulants and beta 2 globuline and i am diagnosed mixed connective tissue disease my most bad symptoms arthritis on fingers and skin panniculitis but i have also hla b27 positive gene and familial mediteranean fever gene carrier and my doctor thought my arthritis associated connective tissue disease but panniculitis associated another rheumatic disease. So doctor you seen before like this case like me ?
I was diagnosed with scleroderma and was struggling with skin tightness and joint pain. After following Planet Ayurveda’s treatment, my symptoms have improved significantly. My skin feels more flexible, and the pain has reduced.
I'm sorry to hear that you're feeling this way. Remember that there is always hope and support available. Reach out to someone you trust or a helpline if you need to talk.
Thank You Dr. G. I am an autoimmune disease nightmare. I so appreciate ALL YOUR videos✌️
Thank you for watching my channel!
Hi Dr Girnita. You should contact Professor Johannes Nossent here in Perth, Western Australia. My husband was his patient. He had Disabling Pansclerotic Morphea. My husband lost his life to the disease last year on the 18th of August 2023. The disease hit him in November 2014, but he was only diagnosed approximately 16 to 18 months later. He was 54 when the disease manifested, and he was 63 when it ended his life. Such a cruel disease 😔
than you for your suggestion!
Awesome presentation! Easy to follow and understand. Thank you Dr. G
Glad it was helpful!
I too have been diagnosed. My hands are a mess. Up toward my elbows as well as toes.
Thank you for watching my videos!
Same problem... Aap konse doctor ko dikha rhi h
Thank you for this! I was actually diagnosed at a Scleroderma Clinic in Chicago at Northwestern. I was diagnosed July 8, 2020. I have systemic sclerosis. My Paternal Aunt passed away from this disease in October 2020. They always tell me that everyone is different. I run a fever most days but this is not common. My Rheumatologist has resigned that this is what my body does. I have severe Reynauds with ulcers frequently and I also have the hemorrhaging in the nail beds constantly. My entire GI tract has been affected. I would highly recommend anyone with this disease since it is so rare, to go to a Scleroderma specialty clinic, since the clinics have different specialists on staff for different body parts affected. I drive 6 hours twice a year and then do telemed appointments on the off months. Again, thank you for this presentation. You did very well!
I'm glad you found the information helpful. It's important to raise awareness about rare diseases like Scleroderma.
Thank you very much for this helpful information. I was diagnosed with this disease last year. My dr is very good but hasn’t really talked to me much about this disease. I had lost my identical twin sister several months before going to this new Rheumatologist in a new town and I believe she was so compassionate she didn’t want to give me more sad news. My twin was diagnosed with IPF and I truly believe now that she had this same condition. I need so much information about this autoimmune disease and treatment. I’m starting to feel like my autoimmune disorder is going at a very rapid pace. I’m afraid before I know it I will be completely in pain and bedridden. I want to fight this as long as I can.
I'm so sorry to hear about your diagnosis and the loss of your twin sister. Stay strong and reach out for support whenever you need it.
I have just been diagnosed with ss, my Dr believed I had IPF, further testing found I have SS,
@@susanashworth-mb1hiI’m so sorry that you have been diagnosed with this disease. The only information I get is from listening to this Dr and her ever so patiently teaching of this disease. My primary care Dr and my rheumatologist have yet to discuss just watch my blood work come back worse every few weeks. I don’t know what to do. I’m not feeling very good since January and I’m scared. I will pray for you.
@@rheumatologistoncallI would like to become one of your patients if possible. How do I find out where you practice or where some of your offices are located. I’m getting scared and I feel I need to move faster than my Dr is moving. While trying to deal with this new pain I’m suffering from my back. I had surgery on back last year but feel it’s starting to get extremely painful again.
Thank you for making this video. I was diagnosed this May 2024 with Scleroderma. I show no outward skin signs and it seems to be affecting my lungs only at this time. I have recently quit smoking. I have a great team of doctors helping me. You explained everything so well.
thank you so much!
@@duncanneal5278 🙏🙏🙏 I pray for healing… I have some sort of restriction not obstruction going on w my lungs- it is scary and uncomfortable- praying for all healing
Thanks!
So kind of you to offer this!!!
I was diagnosed with CREST scleroderma about 15 years ago and just recently started getting the calcinosis bumps on 2 of my fingers. Some are painful and are like blisters. Is there a treatment for this? I have been to several Rheumatologists who are not too informative. Unfortunately your program doesn't cover my state. Thank you so much for this channel.
I'm really sorry to hear about your experience with CREST scleroderma and the painful calcinosis bumps. It’s frustrating when you feel like you’re not getting the answers you need.
Thank You Dr. G. due to my scleroderma my stomach is not moving also part of esophagus. If I am in this case what is next organ and how many years I could live? I have skin problem and sometimes 7 fingers top is all white... should I prepare everything?
Please let me know.
you need a specialist, I will post a video soon with one of the best specialists in the world that treats scleroderma
Have you ever heard of any cases of limited systemic sclerosis being aggravated by physical trauma, such as a fall? I fell backward onto both hands and fractured my left pinky. The tip of the fractured finger developed painful, thickened skin, like a callus, which I couldn't figure out. Over the next weeks, several other fingers on both hands developed swelling, Raynauds, and ulcers (right index finger severe). In 3 months I was diagnosed with limited systemic sclerosis, after never having these issues before the fall.
Thank you for watching my channel! Share the information with others in need!
I guess that's a no.@@rheumatologistoncall
Excellent presentation. I have been on the road to this DX for a few years now. The latest symptoms that have pointed to Systemic Sclerosis have been swelling and pain in hands and toes, nail changes, Telangiectasias, Barret's esophagus, dysphasia, and joint pain. Pretty much everything but calcinosis, but who knows that might be next. I've had a DX of Polyfibromatosis syndrome for 8 years so I think that's going to be an overlap. Going to see a Rheumatologist in a few months. The wait is due to as the short supply of that specialty in my area. I'm documenting changes with photos to help with the DX. I hope I'm in time to do something to slow it down.
Thank you for sharing your experience. It's important to stay proactive with your health.
What is the best option treatment Doctor, l have been diagnosed with MCTD. But it’s looking more like SS now 😢
I will share more options, soon!
Very informative. Thank you Doctor.
So nice of you
i have had the diffuse SSc for 3years now with all of the above problems...i was put on. prednisone and Azathioprine plus many other meds to help with the gass and pulmonary hypertension...i had some improvements and gradually reduced zhe dose to.a maintenance dose oflet i have now started getting crazy skin thickening...i don't know what to do
I am so sorry
i have ac8 homogenous nucleolar pattern ana 1:100 weak positive and sm/rnp weak positive antibody without sm and positive antiphospholipids lupus coagulants and beta 2 globuline and i am diagnosed mixed connective tissue disease my most bad symptoms arthritis on fingers and skin panniculitis but i have also hla b27 positive gene and familial mediteranean fever gene carrier and my doctor thought my arthritis associated connective tissue disease but panniculitis associated another rheumatic disease. So doctor you seen before like this case like me ?
you look like a complicated case.....
I was diagnosed with scleroderma and was struggling with skin tightness and joint pain. After following Planet Ayurveda’s treatment, my symptoms have improved significantly. My skin feels more flexible, and the pain has reduced.
Thank you! Please subscribe to my channel!
Plz btean apko kia problem thi auto immune diseas tha kia apky skin py itching thi
@@Maheshthakur-vh3sx plss aap btaye apne konse doctor ko dikhaya plss
Test for lyme/ tick bourn illness
It's important to get tested if you suspect Lyme disease or a tick-borne illness.
Thank you for this video🩵 I have scleroderma it’s a very complex disease this was very informative
I'm glad you found the video informative! It's important to spread awareness about complex diseases like scleroderma.
It's not a nice picture if you got the sickness it's best to leave this World no one is here for ever I hate that sickness it's a really bad
I'm sorry to hear that you're feeling this way. Remember that there is always hope and support available. Reach out to someone you trust or a helpline if you need to talk.
Unfortunately, no one will prescribe pain medication for this. Talking to someone is "useless" and it's tiresome,