Please could someone help me out with this !

[Rachel100876]

Hey All,

Quick question I have Raynauds, they are now looking into Scleroderma. But back November last year I nearly died from having a few pulmonary embolisms in both lungs . I was wondering could they be linked at all coz things are starting to piece together slowly ? I also choke on my food every time I try and eat or drink anything, suffer with joint pain. Not on any tablets for Raynauds neither. Thanks for all your help in advance. Rachel xxx

[Jmrose]

I'm not a doctor but I have Raynauds and scleroderma and have lung issues, throat issues, coughing issues, digital ulcers at times and painful hands and feet and at times get very fatigued. So for me I think its all related

[Sanmateogirl107]

prazosin 1mg for raynaud's you need to do gastric empty study, mimotry study, rheumatologist or immune doctor now make noise do not take no for an answer. if your in pain i take wild lettuce extract wild mt rose herbs, ebay it works great for pain. hope that helps hugs for a better day. love julieanna

[Jackiecatlady]

You need a FULL PANEL blood test . My sister told me to ask for that , and that was how I finally got diagnosed for Scleroderma . They discovered a anti body in my blood that corresponded with one of four antibodies , that one of which will be there .Each type of antibody determines the course your Scleroderma can take . With my antibody (centromere) they check my lungs and heart every year . Because Scleroderma is an auto immune disease this leaves you prone to attack from rheumatoid arthritis , and gastric issues . As a child I always had white finger ends, Raynaud's, I was finally diagnosed in 2017.. I am under the care of a specialist , Dr Stevens at Doncaster royal infirmary . Once they find proof in your blood you will be cared for . I am on Methotrexate to hold back immune system , take once a week , plus tablet to tackle gastric issues and high blood pressure . Most of what they put you on will help , the worst thing with me is the chronic fatigue especially in winter , sleep forever . Summer I feel normal as long as I don't over use my energy that can put you in bed for two days . You sound like I was before I got my proof .it was a relief as my family was beginning to think I was a hyperchondriac !! Good luck in your quest for the truth . Make notes , I watch medical lectures on the subject on you tube to keep up . Information is power . Go s can't be experts on everything but you can be an expert on you 😉💛🌟

[Ricexxjm in reply to Jackiecatlady]

Thanks

[Jackiecatlady]

SORRY IT WAS SUPPOSED TO SAY GP,S CANT BE EXPERTS ON EVERYTHING

[cctexan]

Rachel when I first was “ diagnosed “ it was from a smart nurse practitioner ( not a dr but helper). I was complaining of something and she ordered my first ANA test. Thank God it came back positive bc I finally started getting diagnosed. It’s only one of 2 positives I’ve ever had

But I was only diagnosed with MCTD, and I was relieved when I got diagnosed with lupus. My labs aren’t consistent with all my levels still, but when I discovered that I could still get other immune illnesses, I prayed it would never be scleroderma!

I have the same range others have: sjogrens, Raynauds, lupus, fibromyalgia, fatty liver and a little hep c sprinkled on top for grins and giggles.

Even though I’m a big ball of what’s on the menu, I pray for my sisters in health with scleroderma. I have little hard patches on my toes and feet of something. But I’ve come to realize that our bodies are just weird!!

It’s normal to have extra bones in your foot, to have acid reflux for 25 years and drs never tell you how that damages the ability to swallow

Makes you wonder what level they graduated med school. Not everyone is top of the class. Lol.

E