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I am new to the forum, and need advice, help, consoling.


10 years ago I was diagnosed with Fibromyalgia and chronic fatigue. Then a heart problem, tachycardia and an intoleration to exercise, I was put on an inhaler. Then I passed out and was diagnosed with MS and put on several medications to control it. Eventually, I started choking on my food, it felt stuck in my chest and I would have to vomit it up. This started happening on a regular basis and I finally went in to have my esophagus stretched. I was told that this is not common with MS. I had some scarring, GERD, and a hiatal hernia. I was put on Prilosec. About 5 months later, they had to do it again. Then I fell down a flight of stairs several times and ripped something in my shoulder and needed surgery.


During recovery, I healed so fast that my PT said I have Ellers Danlos Syndrome and needed to get it checked out, except for the fact that my skin is to tight. No elasticity in my skin at all. At the doctor, we discussed the E.D.S and which one I have. In our talk, I mentioned that I was experiencing choking again, sporadically, some swelling in my hands and feet with major pain in both upon waking up, mouth ulcers all over my tongue and in the corners of my mouth making it impossible to open my mouth to eat. My hands are always dry and will get a puckered look on my fingers. He ran a bunch of blood tests. As the results started coming in, they all were good. Then he called, my CRP was elevated, my Sed Rate was up, and my SCL-70 was positive at a 7.6.


So now, on top of everything else, I have this to deal with. My appointment with the Rheumatologist isn't until October, so I wait. Worried every time I start hyperventilating when I walk up some stairs, or on a walk with my family. Watching my mouth for more ulcers or when my tongue starts hurting. Stress is high as I also found out my son has a Chiari Malformation that needs surgery, at least I can focus on him for a bit.



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Hi Lucidmom,


Welcome to these forums!


I'm sorry to hear that you're suffering with so many unpleasant symptoms, and it could possibly be that you'll be adding scleroderma to the mix. I say possibly, as the symptoms you describe could relate to any number of health problems (not only scleroderma) and it really is up to your rheumatologist to determine your diagnosis and the treatment you'll need. I'm afraid it's not possible for anyone on thse Forums to diagnose your conditions, as per our guidelines, we are non-medical volunteers and you should always consult your doctor for medical advice.


We do recommend that our members consult a listed scleroderma expert as this complex disease does require specialist knowledge and expertise in dealing with all its different facets, especially as you do have a plethora of other health problems. Unfortunately, getting stressed is the very worse thing you can do, as stress can cause hormonal and cellular changes in our bodies which can lead to a variety of medical problems and chronic stress is thought to be a trigger for the development or exacerbation of autoimmune diseases. Easy to say, I know, but true, nevertheless.


Kind regards,



Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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