2014 Anaheim - What the Doctor Should Have Told Me About Scleroderma

[@labradormom3656]

Very helpful. I can clearly see the differences between limited and diffuse disease here. I really wish that General Practitioners were more familiar with this disease (esp in the U.K.) My diagnosis was missed for a number of years. I actually ‘diagnosed’ myself (in the loosest sense of the word) and then had to pay privately, to see a consultant with expertise in scleroderma and show him the visible signs and my medical history (telangiectasias, Raynaud’s, perioral furrowing, history of dyspnea and silent reflux, extreme fatigue) by which point he agreed that I most likely had Limited Scleroderma and I am now undergoing the PFT’s, echocardiogram and barium swallow test, in order to clarify further, exactly what is going on and where I’m at with the illness. They say ‘don’t google’ medical stuff but googling is what lead me to answers. Thank heavens I did!!

[@lillyrocks2011]

Hi, How are you? I can relate, it took 10 years at least to get the diagnosis. Despite having the positive tests for Scleroderma the pseudo specialist in my country I was dismissed and ignored. It was by myself that googled a symptom and I was looking by myself and that's how first I knew about the disease and I went with that "specialist" and she ignored my symptoms and labtest and she goodbye me telling me that is fibromyalgia and depression. 😐😑 Finally I got the diagnosis but it was very difficult because here the disease is still likely unknown. And yes too google helped me but the doctors I went back then didn't. I feel so sad that this disease exist, it's really terrible and confusing. And it feels like in middle ages because we have to go through all the pain, signs, changes and live with them and little understanding and medications are so few and nothing yet that attacks the disease directly. I pray 🙏🏼 for a cure and better treatments,to stop 🫷🏼 the over progression of collagen, fibrosis in our organsz skin. 💊⚕️🙏🏼🕯️

[@KidsNPlay]

This is the best most thorough informative video on scleroderma that i've seen!! thank you so much for this. My sister has been recently diagnosed and i'm doing as much research as humanly possible to help my sister. Thank you again.

[@marymurphy919]

Did you find anything to help your sister? I hope so but if not have a listen to others who have suffered and if you're interested contact me.kzbin.info/www/bejne/j4exe59nltODgLM Reliv does not diagnose, or claim to heal, but it has certainly helped a number of people. here's another kzbin.info/www/bejne/iaGYlZR5hb-qo80

[@marymurphy919]

For some reason I can't comment :-(

[@woodswal]

It's not boring or monotone. Straight to the point while making sense.

[@ruthruth3133]

very informative... any further updates??

[@rositamorales3567]

Thank you doctor God bless you,I have scleroderma difusa hypertension ☹️I’m so tired without energy ☹️

[@cambbrown6205]

Thank you this was most useful. I wonder how much more is known now in 2023. I was diagnosed 10 months ago with Limited Scleroderma. In the UK I have been prescribed an Immunosuppressant, Hydroxychloroquine Sulfate. That was not mentioned as a possible treatment. I wonder how that affects the way the disease develops.

[@RareAirTwo4]

Whatever you do, keep stress and anxiety out of your life or your condition will worsen terribly. I hope you dont have calcinosis yet, as it can be devastating.

[@lillyrocks2011]

Hi, how are you? I have limited scleroderma too. 😢 I don't know if there's something new. But I hope we can have a medication for the skin fibrosis, tightening. I think it's ok how you're taking the inmunopresor and hidroxichloroq.

[@cambbrown6205]

@@lillyrocks2011 Hi, Thank you for asking, I'm fortunately not experiencing too many symptoms so far but it sounds scary. How are you?

[@lillyrocks2011]

@@cambbrown6205 Limited progression is slower. It's great you've been early diagnose. That's of great great help.

[@lillyrocks2011]

@@cambbrown6205 I wasn't so early diagnosed. A bunch of ignorant, non empathetic doctors that ignored my positive labs.

[@user-fi5mn8gv4z]

Simple and informative ; thanks .

[@woodswal]

Darn....he ran out of ⏲️ time. I watched the whole thing without breaking. He explained everything so well and so simply. I will listen again. Not boring but so useful. 👍🏾

[@ppmny7015]

Dx Limited SSc sine Scleroderma 2001: all of my symptoms started during pregnancy with twins. Heartburn first, gave birth in October 1998, Raynauds and ulcers began winter same year, lasted 3 years w/ spontaneously improvement in ulcers. Raynauds still active, multiple internal organ fibrosis. How correlative is multiple birth pregnancy in SSc I wonder? 🤔

[@marcilk7534]

I tested for high ADA and anti centromere antibodies. The only potential symptom I have is GERD, but lots of people have GERD. I have seen that just because I have the antibodies doesn’t mean I have scleroderma, but what I can’t figure out is if it means I will guaranteed develop scleroderma sometime in my life.

[@giedrejuskiene8927]

Hello, what about just having antibodies SCL70, but to symptoms, great lung xray , good capillaroscopy?

[@angelavore8577]

He makes no distinction between crest and diffused. Good vid a lil confused at which I really have.

[@SclerodermaUS]

That question is best directed to your rheumatologist.

[@cynthiagonzales2388]

Crest is the same as limited.

[@kakarnyori5457]

I have a question. In the presentation, Dr said that much of the action take place at the early stage of 5 years. Does this mean, if the symptoms are controlled properly within 5 years, it is possible that SSc will go away gradually?

[@SclerodermaUS]

Dr. Clement explained, "My comment about the first 5 years meant if heart, lung (scarring) or kidney involvements do not occur in the first five years of scleroderma, then those involvements are not likely to begin anew after 5 years. This has nothing to do with treatments. This does not mean that if treated they will go away."

[@11kwright]

At point 46:27 did he say "viagra" in that it would help with pulmonary arterial damage from SS because if one can't get hold of some of the other meds then for sure viagra would be easy to get hold of. I've been recently diagnosed with a strong positive scl-70 and I do have tightening of the skin above the knuckles so the doctor pointed out. I also have very minor joint stiffness in my knuckles and the odd niggles in my body from time to time but nothing to shout about or hinder me from going down the gym. However, I'm just very scared that I'm trying to equip myself just in case I fall into the category whereby some of the drugs mentioned above I may need to consider self-medicating if the doctors meds aren't working. Pray of course I don't get to that stage as I'm doing everything now in my power to stay healthy and that through diet - learning about foods that alkalise the blood (calm the inflammation down) and I guess with exercise hopefully that might put me in good stead. Any further help that be of benefit I'd be very happy to know.

[@horseman694]

Yes ,he did say Viagra . But as a female , we can not take that . I do know that it helps with the blood flow . Please if you find out more about it , can you let me know . Thank you . May Jesus and his Heavenly father , God help you through this . ♡ AMEN ♡

[@eagltruth]

Actually viagra is given to women and it helpes with Raunalds disease. My RA prescribed for me.

[@juliethompson7623]

My daughter has that, need help to find a Dr .The one she was seeing at the Mayo Clinic in Rochester is retired. Does anybody know a doctor that's treating this conditions?

[@SclerodermaUS]

Hi Julie, please contact the Scleroderma Foundation [phone], [e-mail], to discuss treatment centers.

[@marymurphy919]

Julie I just heard this please look into it and contact me kzbin.info/www/bejne/j4exe59nltODgLM Reliv does not diagnose, or claim to heal, but it has certainly helped a number of people. here's another kzbin.info/www/bejne/iaGYlZR5hb-qo80

[@SignedOff402]

My skin thickening and digital involvement is in my feet. My fatigue has been present my entire life and I functioned with help of stimulants (diet pills) and caffeinated beverages. GI - Wide-mouths diverticula and multiple bouts of diverticulitis with sigmoidectomy. Heart - BP is 91/61; low blood pressure has haunted me and led my symptoms of fatigue to be confused with an “athlete’s blood pressure.” I am now living in the street and unable to work due to fecal incontinence and lack of endurance, edginess, agitation and irritability from my body sensations which are hard to describe but include hot flashes cold flashes and itchy dry shrinking skin which makes me cringe inside, like I want to escape my body.

[@marymurphy919]

Oh I'm so incredibly sorry. I was looking for something else but you might want to listen to this kzbin.info/www/bejne/j4exe59nltODgLM and contact me back if you want more info. Reliv does not diagnose, or claim to heal, but it has certainly helped a number of people. Here's another kzbin.info/www/bejne/iaGYlZR5hb-qo80

[@AliciaGuitar]

I have limited ssc and Crohn's (my cousin has diffuse and Crohn's interestingly enough). I started Stelara for Crohn's after my esophagus sclerosed and I had trouble swallowing and had multiple lung nodules and heart sclerosis. The Stelara seemed to improve many ssc symptoms and completely reversed the esophagaeal sclerosis. I still have problems with millia en plaque getting infected and the lung nodules only shrunk slightly. I still feel like the Stelara was a step in the right direction and maybe there should be studies on this particular biologic and it's effect on ssc. It was originally made to treat psoriasis so it makes sense we are close to a perfect ssc biologic!

[@josecarlos9289]

I'm happy for you! And your experience sounds very interesting, did you take it with other meds like metothrexate or alone?

[@stevensantos369]

iloprost was fda approved in dec 2005

[@Carylina1]

I found iloprost unhelpful. I would not go near it again.

[@andrearossi7063]

♥♥♥

[@nyledublar0812]

Idiagnose my scleroderma when i was 12 yrs old

[@denisdaly1708]

Hope you are doing ok.

[@kerrysinclair6173]

This is very interesting my granny has had scleroderma for 5 years now!

[@stevensantos369]

Kerry Sinclair check out the vid from dr. pompa while he interviews a guy in blue polo shirt. From what I gather its sounds as if antibiotics given to our meat animals are the problem. i have SSc.

[@aremedyproject9569]

Kerry Sinclair Go away.

[@carolynhall1576]

.

[@shanarstra2129]

Cant wait till we get rid of doctors and get med beds!