Scleroderma & Raynald's (2016 May) - Robert Su MD

Scleroderma & Raynald’s - Presented on May 7, 2016 at Northern California Rheumatology Society (NCRS) Patient Education Symposium - by Robert Su MD

[@JustColleen]

I'm a sixty year old female and I've suffered with Raynaud's my entire life. It affects my fingers, my toes, my nose, my ears - which is so painful, and my nipples. All my life I have also had, upon waking from sleep occasionally, puffy hands and a puffy face. Sometimes my puffy hands last all day and the skin feels tight. I diagnosed myself with Raynaud's when I was sixteen years old from a Cosmopolitan Magazine article and the issue has never been dealt with by a doctor. My hands stay numb for hours and if winters are cold enough I won't feel my toes all day. They won't defrost until I'm sleeping just to go cold first thing in the morning again. Around 2005, I developed a rash on the inside of my upper arm that itched and would not go away. At times it would appear on both arms but was dominate to my left arm. It stayed for years. I also started having other strange symptoms. After visiting a doctor, they initially diagnosed me with Sjogren's Syndrome but after a year, they said I didn't have it. Then, as time went by they told me I had CREST Syndrome. At eighteen I started having difficulty in eating where my food will occasionally hang up in my esophagus. I hold my breath and wait while it slowly goes down and pain radiates throughout my rib cage. I also have a hiatal hernia that I think appeared in junior high school. After about a year, they also recanted that diagnosis because they say my skin isn't hard. I do have these weird hard spots that started appearing when I got my rash. One year, I was riding a bicycle alone at night and all of a sudden the world went sideways and I didn't know where I was. It took a good five minutes before I could recognize my surroundings and by the time I got home the rash on my arm started disappearing and it started appearing on the palms of both hands and they itched like crazy. At first, I thought I was bit by mosquitoes on my fingers but then the bumps started and I knew it was that rash. After a few days it seems to calm down then the skin on both of my palms started to peel off. I've only had the rash back once. It appeared on both arms stronger than it ever had and I couldn't stay awake. I went to the doctors because I thought I might have diabetes and they said it was my Immune System causing the problem. After finally being referred to a Rheumatologist right before COVID hit the only diagnosis they gave me was Fibromyalgia because I get what I call sharp ghost pains that appear in all sorts of different places on my body but more on my thighs, wrists, ears and eyes than anywhere else. Sometines on my torso, too, but not as often as the other places. I always envision a metal rod going through the area that has the pain when it comes because that's what it feels like to me. I also believe that I have Minnier's Disease in my ears because I have issues with them feeling full and I have big issues with my balance especially upon waking. I have also had the pressure of them release with a load screeching noise in my ear after being full for months sometimes years, never both at the same time though. It's always individually. I believe that had everything to do with the day I got lost and my rash moved to my hands because when my vision changed the pressure in my ears did, also. I have spent years trying to figure out what is wrong with me. Ran up thousands of dollars of doctor bills. I have so many other symptoms and strange happenings with my body, if I listed them here, this comment would just go on and on. One of my primary doctors once told me I was the most confusing case he has had his entire career and the man was pushing sixty years old, I would estimate. It's still my belief that I have CREST Syndrome, I don't care if my skin hasn't yet hardened. I have spent so many years confusing doctors that I finally gave up going to them at all. All I've ever received for treatment is six or seven days of Prednisone to get rid of inflammation. That's happened maybe five times at the most over the years. I finally just learned to live with all the weird things my body does. I'm on no medication, never really have been. I just deal with my symptoms as they come and try to stay as warm as possible during the winter. When I was young I was always the skinniest person in my class at school. I can say I finally have grown a bit of a spare tire after menopause. When I was skinny, I was always cold and always had numb digits. I'd even have white fingers in the summertime back then. Now that I have some fat on my body, I don't seen to get as cold as I used to and it usually takes touching something like the cold metal of a gate to trigger my Raynaud's now unless I'm out in really cold weather. I live in Southern California and have been told I can't live where it snows or gets real cold. Somehow, I always knew that made me more susceptible to frostbite than others are and stopped going to the local mountains to play in the snow when I was eleven or twelve because it was just to painful on my feet, hands and ears, especially. My dad has Raynaud's and he was never diagnosed but I feel he had CREST Syndrome also. He always had to have his esophagus stretched twice a year because of how bad his food would get hung up. I have a paternal aunt that has RA and her daughter has Raynaud's. Have another paternal aunt that has Multiple Sclerosis. Have a maternal aunt that has RA, Minnier's and Raynaud's. So, if the gentleman that did the lecture sees this comment, I would like to know what he thinks. I know this isn't a complete record of all my symptoms but it's the things that bother me most. If you respond, I would like to thank you now for doing so.

[@kmsahai5122]

Excellent Sir and Brilliant case representation rare lecture make more contributions in you tube or your channel I will subscribe you my request.

[@KangenAlec]

Its a good idea to learn from Hunza people. They live 100-120 years without any illness. All they do is drink Hydrogen-rich water and eat clean organic nutrition. Hydrogen gas and nutrients is a raw fuel for the cells. Thats why the blood and cells must maintain a high levels of Hydrogen (pH) at all times. Acidosis and nutrition deficiency is what creates a disease incl scleroderma. So if you want to be healthy, switch to Hunza lifestyle.