Raynaud's, Sjogren's syndrome, rectal... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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

Pipsmum profile image
7 Replies

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?

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Pipsmum
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7 Replies
uknlv profile image
uknlv

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.

zenabb profile image
zenabb

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.

Pipsmum profile image
Pipsmum

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.

uknlv profile image
uknlv

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.

AHM42 profile image
AHM42

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!!

Pipsmum profile image
Pipsmum

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.

Pipsmum profile image
Pipsmum

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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