I am so grateful for this interview - I live in South Africa, born in USA - diagnosed with Cerebral Lupus Vasculitis in 2007 - treated in 2011 at USC by Proff Weiner - 2 years of Rituximab, got covid and long covid with small fibre neuropathy & Dysautomia - suffering so badly and became bed-ridden of late - blood tests came back with Your blood tests showed a high-level positivity for ANA (ANA TITRE IIF 320) with an anti-centromere pattern. On ENA testing the tests also picked up anti-centromere antibodies at lowish positive level of 12.0 U/ml (Normal < 10 U/mL) - final diagnosis of limited Scleroderma - started Plaquanil along with treatment for GI tract. It has been a horrific 17 years - this has helped me tremendously. Thank you.
Hello! I have Scleroderma. I was diagnosed in middle school, at the time much wasn't known so I didn't receive treatment. Now as an adult, I still haven't received treatment due to no health insurance. It has now spread to the back of my neck along my spine and is going up my skull. It impacts my life everyday and I pray that I will be able to receive treatment one day. I live an active life the best I can, but due to it being in my upper neck/spine, I worry that I will become a quadriplegic in my future. Any suggestions?! Thank you!
Hi Dr Diana, Have you come across cases of Limited Systemic Sclerosis that were triggered by trauma? Or Raynauds (not primary)? I fell and fractured my finger, and within a month I had a new onset of severe Raynauds, skin hardening, ulcers, pitting, one index finger almost gangrene. I was diagnosed with Limited Systemic Sclerosis 4 months after the trauma. (+centromere) Thank you for the video!
My Rheumatologist put me on that. I could only take it for 6 days. It made my heart beat faster, my mouth really dry and irritated my stomach. She just put me on another medication called Sulfasalazine. I haven't started taking it yet. I really don't like taking these medications. The side effects seem worse than the cure.
Thank you for sharing your experience! I appreciate your suggestion and will definitely consider making a video on diffuse cutaneous systemic sclerosis scleroderma.
Yes, multiple rib pain can be a symptom of fibromyalgia. It's always best to consult with a healthcare professional for a proper diagnosis and treatment plan.
I was rushed to ER a few months ago with what felt like sharp pain in my chest - they said it was Tietze syndrome and must rest. A few months later - my back collapsed - another ER emergency - now found multiple bulging disc's by Neuro surgeon - home to rest. Finally my Professor of Rheumatology was called in and immediately did bloods and video called with me to explain all previous symptoms coming down to lImited Scherodoma - so yes, my chest presented with pain - but it came back to this - so much confusion and a hard way to have gone to get to this point
I am so grateful for this interview - I live in South Africa, born in USA - diagnosed with Cerebral Lupus Vasculitis in 2007 - treated in 2011 at USC by Proff Weiner - 2 years of Rituximab, got covid and long covid with small fibre neuropathy & Dysautomia - suffering so badly and became bed-ridden of late - blood tests came back with Your blood tests showed a high-level positivity for ANA (ANA TITRE IIF 320) with an anti-centromere pattern. On ENA testing the tests also picked up anti-centromere antibodies at lowish positive level of 12.0 U/ml (Normal < 10 U/mL) - final diagnosis of limited Scleroderma - started Plaquanil along with treatment for GI tract. It has been a horrific 17 years - this has helped me tremendously. Thank you.
Thank you for following
Thank you Dr Diana and Dr Daniel very much ❤
Fantastic talk! Thank you for giving patients a lot of optimism.
So do you guys think it would be a good idea for me to take the trial shot?
Thank you both so very much for all your work 🙏🌷
Thank you too!
Hello! I have Scleroderma. I was diagnosed in middle school, at the time much wasn't known so I didn't receive treatment. Now as an adult, I still haven't received treatment due to no health insurance. It has now spread to the back of my neck along my spine and is going up my skull. It impacts my life everyday and I pray that I will be able to receive treatment one day. I live an active life the best I can, but due to it being in my upper neck/spine, I worry that I will become a quadriplegic in my future. Any suggestions?! Thank you!
Thanks
Hi Dr Diana, Have you come across cases of Limited Systemic Sclerosis that were triggered by trauma? Or Raynauds (not primary)? I fell and fractured my finger, and within a month I had a new onset of severe Raynauds, skin hardening, ulcers, pitting, one index finger almost gangrene. I was diagnosed with Limited Systemic Sclerosis 4 months after the trauma. (+centromere) Thank you for the video!
thank you for your support. did you subscribed?
Doctor could you please let me know what is the natural alternative to hydroxychloroquine?
My Rheumatologist put me on that. I could only take it for 6 days. It made my heart beat faster, my mouth really dry and irritated my stomach. She just put me on another medication called Sulfasalazine. I haven't started taking it yet. I really don't like taking these medications. The side effects seem worse than the cure.
there is none!
Thank you for watching my channel!
4 yrs ago i was diagnosed with "diffuse cutaneous systemic sclerosis scleroderma" can you do a video on just that subject?
Thank you for sharing your experience! I appreciate your suggestion and will definitely consider making a video on diffuse cutaneous systemic sclerosis scleroderma.
Hi. Is multiple rib pain also a symptom of fibromyalgia?
Yes, multiple rib pain can be a symptom of fibromyalgia. It's always best to consult with a healthcare professional for a proper diagnosis and treatment plan.
I was rushed to ER a few months ago with what felt like sharp pain in my chest - they said it was Tietze syndrome and must rest. A few months later - my back collapsed - another ER emergency - now found multiple bulging disc's by Neuro surgeon - home to rest. Finally my Professor of Rheumatology was called in and immediately did bloods and video called with me to explain all previous symptoms coming down to lImited Scherodoma - so yes, my chest presented with pain - but it came back to this - so much confusion and a hard way to have gone to get to this point
@@karmarya so how are you now? What did you do to lessen the pain? How about your complete blood count is it normal?
Just like the Union Jack,those colours!
Thank you for watching my channel!