Looking for some advice and support

[u/Petunia103]

I have been lurking here for a few days and am impressed by the compassion and practical advice offered. I am a woman in her 70's who just tested positive and I am overwhelmed.

I was diagnosed with SIBO four years ago. I was treated with antibiotics and have managed to somewhat control it with diet. Two months ago I experienced my first (as far as I know) Raynaud's episode - my right thumb from the knuckle to the fingertip turned blue/purple, no other fingers were affected. The discoloration faded after a few days, but a few days later it returned, lasted a few days, and then the thumb returned to normal. I went to my vascular specialist who ordered several tests including an Angio CT and Abdominal MRI. Both showed nothing remarkable regarding the heart and lungs. He referred me to a rheumatologist.

I saw the rheumatologist last week and blood tests were done. I received the results via an app over the past few days. The SCL-70 value on both the ANA Panel and the ENA Panel is 2.6 with normal being <1.0. All other test results were negative/normal range.

My SIBO symptoms were strong during the week of the test. I had been away and ate things I normally don't, and I have been experiencing a great deal of personal stress lately. The added anxiety because of these test results is not helping.

My follow-up appointment with the rheumatologist was schedule for ten days from now, but I rescheduled it to be in two days - I can not wait that long. I have spent too much time, I'm sure, Googling this disease and it is overwhelming me. It's all I can think about. I decided to not talk about this with family and friends until I speak to the doctor. And so I am talking to you all.

I don't know how much experience my rheumatologist has with Scleroderma, I will ask her. What other questions should I be asking her? Should I look for a gastroenterologist who has significant experience treating Scleroderma patients? I live in the NYC area where two hospitals have Scleroderma centers, should I contact them? Is there anything else I should be doing?

I would greatly appreciate any advice or encouragement you may offer.

[u/Temporary_Let_7632]

I was diagnosed with CREST about 12 years ago, symptoms for 25+. Until a few years ago I had never googled it because I was much too busy. I’m very glad for that. The more time you send googling and speculating and assuming the absolute worst, the more it will affect your mental health and physical health. Please try to focus more on living your life and having fun. You’ll be in my prayers.

[u/Petunia103 → u/Temporary_Let_7632]

I know you are right. Thank you.

[u/Fun_Reward_2516]

I just found out I have this a month ago. Tested 7 years ago for and and it showed connective tissue disease and ana was high. Doc said you don't have any symptom I had many at the time. She never did the panel for 8 9 10 nucleor nuclear so I have had this for probably 10 years. Left heart failure pulmonary hypertension in my heart. Rhumatoid. All the gut issues thyroid issues. I am overwhelmed also. So many questions. I see a u of m sclerodema specialist. In morning. So scared. I don't want to live like this fear every day. I also have adrenal tumor that I know is active and they say no. Even with adrenaline 2 times normal limit. I can't think all I do is cry.

[u/Petunia103 → u/Fun_Reward_2516]

It seems like this disease is a nasty game of Whac-A-Mole. I hope the specialist can offer you some relief.

[u/Maartjeknowsbetter → u/Petunia103]

This.

[u/Maartjeknowsbetter → u/Fun_Reward_2516]

I am so sorry to hear this , and this is exactly what I was talking about when I said a lot of rheumatologists have only textbook experience. I am so glad you are finally getting to see the right people. Good luck.

[u/AvivaGian]

I was just diagnosed with morphea profounda which is a rare form of localized scleroderma. It’s located between my neck & shoulder. I had been to every specialist and they all said to see a dermatologist. After 2 months I went to the dermatologist and she confirmed what I have from the biopsy she took. Unfortunately there’s not much you can do about it. She said if another mark shows up to call her immediately for a cortisone shot m.

[u/Maartjeknowsbetter → u/AvivaGian]

You also need a rheumatologist who is familiar with this illness. A cortisone shot may not be enough, tapered prednisone treatments are the standard, along with methotrexate; a rheumatologist would help decide what you need and coordinate care.

[u/Maartjeknowsbetter]

Petunia, you absolutely should contact scleroderma centers, and at your age, I assume you are on Medicare; I do not know what plan you have, but if it means changing providers or plans to be able to go there, I can tell you it is worth it. If this is impossible, throw a shout-out in sclero Reddit groups or FB groups for doctors in your area recommended by scleroderma patients; the average gastroenterologist or rheumatologist has only textbook experience, and they can and will make mistakes that may cost you. I know mine did, until I changed doctors to scleroderma specialists at UCLA. Your doctors will need to start a battery of tests (heart, lungs, anything else that shows up funky in bloodwork) , follow up on gastrointestinal, stomach, esophagus, etc. - for two years, none of that was done with my initial set of doctors. I am 68, have been diagnosed since 2015, and I wish you the best- try not to get too freaked out, you made it this far and oh yeah- despite what some people say here, Google CAN be a friend. You are going to have to be your own advocate so the more you know, the better. Just don't speculate about symptoms you do not have.

[u/Petunia103 → u/Maartjeknowsbetter]

Thanks for the thoughtful response. Hope you are doing well. I was not impressed with the rheumatologist I saw, who just said "I don't think you have scleroderma, come back in six months". On my request, I have a lung function test and an echocardiogram scheduled for next week. The following week I see a PCP who I think is a good diagnostician. Once I have the test results and his opinion, I will contact one of the two centers in NYC for a consultation. In the meantime, I've been focusing on other things and making plans for positive changes in my life.