Raynaud's, Sjogren's syndrome, rectal prolapse and digital ulcer

Hi

I have been diagnosed with Sjogren's for about 4 years, Raynaud's for about 2 1/2 years and have had various pelvic prolapses, including a full rectal prolapse which was repaired by laparacopic rectopexy 18 months ago. The rectum has prolapsed again about 3 times in the last 6 months or so. I have also recently had a small (ladybird size) brown ulcer under my little toe. The skin eventually came off, but healed very well. I also have probable peripheral neuropathy which has been treated for a while with amitriptyline, but is becoming painful again now. I'm wondering if I've actually developed scleroderma. I also suffer from GERD. Does anyone have any thoughts on this?

7 Replies

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  • I am not a doctor and can not say one way or the other if you have Scleroderma, what I would suggest is to ask to be referred to a Rheumatologist who specialises in Scleroderma and they will be able to inform you better. Hope you can get to see some one quickly and they can answer your questions.

  • I agree with the previous answer from uknlv.

    Do you have a Rheumatologist? Some of your troubles may or may not be Scleroderma.

    Best wishes.

  • Hi

    Yes! I have a rheumatologist who diagnosed me with the Sjogren's - and arthritis. He also knows about the Raynauds. I'm due for my annual review next month, so I will ask him then.

    It's very good of you to reply. I don't expect medical information, but would be interseted to know if anyone else has a similar combination of symptoms.

  • I do not have most of your symptoms, but I know of others who have some of them. The thing with Scleroderma is it is a very individual disease, thus why it is hard to diagnose and treat. Each of us have our set of unique symptoms and problems to varying degrees! I have been lucky to not get the ulcers that many have suffered from, but I do have horrible acid reflux, sjogren's and Raynauds to name but a few lol!

    I would suggest when you go to your doctor, ask if he/she will run the blood tests they do to test for the Scleroderma markers or markers for other auto-immune diseases, as they do have very similar symptoms.

  • In order to get an accurate diagnosis as to whether or not you have scleroderma you should ask for a specific anti nuclear antibody blood test. If this is positive then further tests should be carried out. I have Raynaud's and scleroderma and I also had a laproscopic ventral rectopexy last year and have since developed another prolapse which is to be treated by my coleorectal surgeon, with a rubber band!!

  • HI ahm42

    Thanks for your reply. I was due to see my rheumie in a couple of weeks. Now I have a letter postponing it slightly, but to see a different doctor. My doctor seems to have disappeared into the ether! I'm going to use the opportunity to try to get a thorough review of my situation by going with a list of questions. The new doctor is a consultant rheumy and much younger, so she might be more interested than the previous one.

    Interesting to hear about your elastic band. I had a treatment with a band a few years ago for piles. It was very successful. Is it a mucosal prolapse, or a full thickness? I'm waiting for another box injection into my pubo-rectalis muscle, to stop me straining. Hopefully, the rectal prolapse won't get any worse for a while then.

    Thanks again for your message.

  • Hi

    I'm now on a surgery list to have a rectocele repaired, along with a revision of scars on my perineum The joys of being a woman!

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