what is wrong with me

[Sanmateogirl107]

dermatology said xrays show connective tissue but no calcification to suggest scleroderma of mny hands, choking on food, spit it back up solids

[Kilncadzow]

Had scleroderma way back in the late 1970s and early 1980s and had the same problem with food. If I went out for a meal I couldn’t choose what I wanted but had to choose soups, light fish dishes etc that would slide down easily. Dreaded going to friends for meals. I now have virtually no reminders of scleroderma apart from a bent right hand and acid reflux. Very occasionally something sticks and I now eat more slowly than I used to but with the help of Omeprazole I can eat normally. Hope you improve soon.

[Sanmateogirl107 in reply to Kilncadzow]

gastric emptying april 16th stanford then neurology march 12th for more testing and yes i take omeprazole too. julie can;t swallow meds likje gabapentin , calcium, i have a titanium plate c5 c6 c7 acdf 2017 maybe that has something to do with it. julie

[Sanmateogirl107 in reply to Sanmateogirl107]

i would love for someone to tell me yes or no is it scleroderma or just a false positive. doctors said stay on mushy diet, scrambled eggs, pudding, soy milk, soft pasta, butter etc i just want to be healthy. can't any one make a call and say yes it is or no its not i feel like a guinea pig i can't stand waiting for an answer i can't even take a shower with out screaming. its like being hit by thousands of tiny needles, even putting my hands in water it really hurts. now i am allergic to pain meds.

[Intimeslikethese in reply to Kilncadzow]

How did you "grow" out of scleroderma? What do you think caused it to disappear? That is awesome!

[Sanmateogirl107 in reply to Intimeslikethese]

i didn't the doctors said there is connective tissue syndrome, but there is no calcification to prove it, but yet i can not swallow food, so yea i think its scleroderma every test is positive. now they think appendicitis. excuse me no its not. i do not have pain, nausea, fever, healthy. its going after my digestive tract. zofran for extreme nausea the problem my stomach is herniated. so every time i eat its like having a heart attack, nausea, then i vomit up food then my stomach hurts so i do not eat for days. its a great weight loss plan. tons of fun.

[Kilncadzow]

At that time there wasn’t the range of drugs available but I was treated with Penicillamine - a very low dose at first and very regular blood tests to check for side effects. After a couple of months and my dosage gradually being stepped up it started to work and since the very early 1980s I’ve been more or less back to my old self except for the couple of things I already mentioned. I also still have slight problems with Raynauds - but even that is not nearly as bad as it was. At 74 I’m healthier than most of my friends and (touch wood!) no recurrence. Hope you’re as lucky.

[Bec9680]

I was diagnosed back in 2017 been on a treatment called antibiotic protocol basically your body is out of wack bad gut bacteria leaks in blood you have to get your body back balanced healing your gut and taking the AP therapy there’s a book on it called scleroderma the proven therapy that can save your life. It’s hard to find doctors that will do this treatment go to roadback.org and if you email they will send a list of doctors that will do the treatment. There also lots of remission stories to read to lift your spirits. Thank God for them I’m two years into it and about 60% better. Have to watch what I eat at night to Avoid reflux.

[Sanmateogirl107 in reply to Bec9680]

thank you will do it right now. i just do not understand why stanford has not given this information. prazosin, slindelifil, cellcept made me so sick. thanks your magic. love julie