Possible Scleroderma : Is it possible... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Possible Scleroderma

roseter profile image

Is it possible to have G I tract scleroderma without skin issues?

Been suffering for 12 years with no diagnosis but worsening symptoms. I do have a peculiar lumps on legs and small blood spots on lips and tongue.

Any suggestions gratefully received.

27 Replies

Hi there,

From what my consultants say, anything is possible with Scleroderma. I have lung and kidney involvement with Raynauds too. However, no skin involvement as yet. You need to see a doctor and get the blood tests with a referral to a rheumatologist. There could be other conditions that it is also so worth getting checked out.

Wishing you all the best with getting it sorted.

roseter profile image
roseter in reply to TopCat07

Thank you TopCat 07. I have been trying to get the doc to get me to a rheumatologist but they seem reluctant. I have several other autoimmune problems, Raynauds, PBC, Sjogrens so I think its a strong possibilty.

TopCat07 profile image
TopCat07 in reply to roseter

Sounds like it! Are you under a consultant for any of those? Maybe bring it up at your next consult? Xx

Bkart profile image
Bkart in reply to TopCat07

Hi TopCat07,

I have just posted a reply to trunchalobesity, could I ask the same questions of you if you have the time. I think that like Roseter when we are in this ‘no mans land’ of diagnosis we start to get desperate for answers. I know I am, I’m just so down at the moment I can’t help it!

Yes GI involvement is usually one of the first symptoms. Skin really does vary, mine looks normal.

Lumps and bumps I’ve never heard of

Hi trunchalobesity,

I’m having similar problems to Roseter and have just posted a reply to her, mine without the length of time though. I was interested to read your comment about

your skin looking normal, hope you don’t mind me asking but I’m presuming you have a diagnosis of Scleroderma.

This is what I’m finding so difficult to understand about this disease and diagnosing it, everyone has such varying symptoms but when it comes to being diagnosed there seems to be a very strict list of boxes to tick. I just wonder

about those of us who whilst seeming to have most of the

important symptoms but are equally falling just outside the box, if all this makes sense to you. Have you ever had thickened hard skin?

Whilst my hands are puffy and tight especially in the mornings, I can still pinch the skin, however the skin on my legs and ankles is so tight it’s affecting my walking quite badly and I can’t pinch it but this doesn’t seem to be have taken into account when being diagnosed. I was told that despite the awful tightening on my face as the skin isn’t hard that doesn’t count either. My skin was harder on my face but now has softened a bit which is weird.

Unfortunately I wasn’t able to ask all these questions or to thoroughly explain things at my Consultation. I do try to google these questions but I find it more helpful to ask questions here from people who are going through the same things or have more knowledge than me. Sorry for this long post but I am so confused as it seems the criteria for diagnosis seems to vary so much. Forgive me if I have asked too many personal questions of you but I am really struggling to understand how something can so badly affect our lives but we can’t get the answers we are seeking through the medical profession.

I had a quick diagnosis as I had the scl70 antibody present (fast onset). They score skin on thickness by pinching but it has only been done a few times with me. My skin has tightened on my face and the Drs say they can tell on my forearms but no one else would be able to.

Early symptoms are usually GERD gastro oesophageal reflux disease (reflux). Raynauds.

If you are under a specialist rheumatologist I wouldn’t worry too much about a label. They treat the symptoms as there’s no cure. You should have a variety of tests annually to make sure no organs become involved.

It’s a multi faceted disease that effects people differently but it also overlaps some like lupus.

As long as any symptoms are being treated you will be in good hands x

Hi trunchalobesity,

Thank you for your kind reply, yes I have those usual symptoms plus some! My skin feels really tight on my face to the point where my mouth is def smaller and it makes brushing teeth quite difficult, doesn’t it. My teeth have also moved and several feel loose, I was told just to go and see the dentist but without a definitive diagnosis how can

I tell the dentist who has probably never heard of this disease why I think I am having this problem. 🤔

I really do appreciate you and other people taking the time to answer questions and give support especially to those of us who are floundering with the enormity of it all.

My mouth is smaller and cheeks tighter. So an electric toothbrush is best.Please advise the dentist of your symptoms and tell him it’s an autoimmune issue and they will treat you accordingly.

You can get a dental advice leaflet from the SRUK

TopCat07 profile image
TopCat07 in reply to Bkart

Hi Bkart,

My skin at the moment is completely “normal” I still have the skin pinch test and there is no visible tightening or hardening.

My main symptoms are Severe Raynauds, ILD and CKD. My skin is not involved at all, at the minute. I got a diagnosis fairly rapidly, although to be fair I have such great care from all the consultants I see and am priority if I need to see someone. I have the markers in the blood tests and when I was really poorly before diagnosis I had to have infusion in hospital for a week to stop me losing my fingers. Due to the ulcers.

I also see Professor Denton from the Royal Free in London on an annual basis. The consultants down here have no hesitation in contacting him if they need to about any patient with Scleroderma.

It’s a scary disease and I really hope you get a diagnosis soon. I think that the blood markers combined with other factors is what gives them a definite yes or no.

Sorry I can’t be much more help than that.

Take care

Xx

Bkart profile image
Bkart in reply to TopCat07

Thank you for your reply TopCat07, yes I think I would have a diagnosis with blood markers, perhaps over time that will show, most of the symptoms are there. I did have severe finger tip ulcers and sores many years ago but I didn’t then know it was Raynauds, I just thought it was because I worked with horses in all weathers! Coincidentally I was put on Losartan and Amlodipine for a heart condition and my fingers started to heal which was a blessing and I didn’t think to question it. Despite going to hospital and other GP appointments no doctor ever questioned why my finger tips were constantly bandaged, an early clue perhaps lost, I will never know. I still have Raynauds however.

You mentioned that your skin is completely ‘normal’ is your diagnosis Sine Systemic Sclerosis, which doesn’t involve the skin? The last time I had tests I was borderline for exercise induced Pulmonary Hypertension.

Thank you again for your concern and information, yours and other peoples posts really do help me and those people like myself who are

living with the symptoms but not a diagnosis.

Hi Roseter, I’ve just had my second appointment with the Scleroderma Specialist and despite G I track involvement, swallowing difficulties, Raynauds, increased skin tightening, especially in my legs and face (small mouth, teeth moving etc) back and now in my hands and arms, because my skin is not hard to the touch I can’t get a diagnosis. I am horrified that you are still not diagnosed after twelve years, must be so difficult for you.

I’ve got to wait another year and I don’t know how I will

cope with that, but will have to. I met another lady in the clinic and she is still not diagnosed after 4 years, I felt so sorry for her. The not knowing but still having to cope with the symptoms is unbearable I think. I’m beginning to doubt myself which is really upsetting me, but we have

to keep going. Take care and my best wishes to you.

Sophiebun11 profile image
Sophiebun11 in reply to Bkart

The moving teeth is scary isn't it? When you're a kid they are supposed to wiggle and fall out. But not now, no new one will grow back. I'm thinking masks may be a blessing if I lose my 3 super loose teeth!!!

I can only eat soft mushy liquid-like food anyway, so that part won't matter.

Ugh, this is a frustrating disease.

Bkart profile image
Bkart in reply to Sophiebun11

Hi Sophiebun11,

Yes the teeth thing is scary, loosing teeth is normal and cute in small children but definitely NOT cute for adults. Agree about masks they hide a lot, unfortunately we’re ditching masks here in England !!! 😬😠 Back to the drawing board!

Sophiebun11 profile image
Sophiebun11 in reply to Bkart

Honestly, I'd keep wearing a mask for your own safety as you do have a lowered immune system even if Covid were gone which it isn't. Flu and cold season is upon us, so it's best to be safe.

Here in CA we have mandated masks and some restaurants and stores are closed again after re-opening. It's the worst part of the state where I live. People refuse to get vaccinated or wear masks. I do my part but people are getting shot at stores when asking customers to put on a mask as mandated. It is horrible.

I think I may wear a mask the rest of my life. I have too many things wrong with me and I would like to hide my teeth too : )

Besides I have 2 dozen masks in every color and some patterns to match all my outfits so I must continue to wear them, they are a fashion statement!!!!!

Bkart profile image
Bkart in reply to Sophiebun11

Hi Sphiebun11,,Yes I’m continuing to wear a face mask, store assistants and even nurses in hospitals here are not allowed to ask people to put face masks on

because people can be so abusive! We’ve come out of most restrictions here but I think until every country is over Covid no one is truely safe.

I just use the hospital blue masks, boring I know!!

Some of my clothes are so old I don’t think I would get a mask to match, ha ha!! 🥴😂

Sophiebun11 profile image
Sophiebun11 in reply to Bkart

I have to wear double cotton masks. The medical blue masks contain formaldehyde and give me asthma and migraines. I bought a pack of 24 cotton masks one in all basic colors and some pretty shades as well. So I have plenty to wash and wear the rest of my life.

My clothes are pretty old but I don't go out much so I don't wear them out much. I have at home clothes and going out of the home clothes. I try to keep a few things from wearing out like jeans and sweaters. I buy my winter clothes in the spring at sales for 90% off reg. price. It's the only way I get anything new.

We still have the tape on the floor at 6 foot intervals again in stores and at my apt. bldg. They took it up for a while but it went back down 2 months ago with Omicron.

Stay safe! Keep masking!

Dog mask rules
Bkart profile image
Bkart in reply to Sophiebun11

Reply to Sophiebun11,

The dog looks better in the mask than I do all

though the cats not looking too impressed !!!

🐾😂😂

Sophiebun11 profile image
Sophiebun11 in reply to Bkart

Pets look cute in anything. Have you seen Henry's new winter hat?

So many people walk around with their "snout" sticking out of their mask. What's the point if you don't cover mouth and nose? I want to tell them, but it's not safe to do so. I will ask to please give me social distancing since I have an illness. That way they may think I'm contagious and will accommodate me LOL!! Otherwise, people are back to standing 6 inches instead of 6 feet apart in lines.

Henry's winter hat
Bkart profile image
Bkart in reply to Sophiebun11

Hi Sophiebun11,

Yep I’m afraid it’s pretty much the same here.

Henry looks adorable, my cat, Phoebe, won’t even keep a collar on let alone a hat!

Sophiebun11 profile image
Sophiebun11 in reply to Bkart

Henry won't wear a kitty collar but he'll wear bow ties and neck ties. What can I say, he's silly like his momma. My friend has a giant white bunny named Phoebe, I like that name.

The other day I went out to stock up on groceries and 50% of the people in the store did not have on a mask. It really made me nervous, especially since I'm on Prednisone. They may feel emboldened by their vaccine and booster but I think they are taking unnecessary risks by not masking.

Masks are mandatory in the apartment bldg where I live. I'm glad for that. Many here have Covid anyway.

My sweetie Henry is on his wide window sill taking his morning sunbath. Then later he'll go lie by the heater when the sun moves to the other side of the bldg.

Give Phoebe a hug for me and Henry!

Tank you for your support

The blood spots are called telangiectasia. You may have what's called CREST syndrome aka Limited Scleroderma. (C-calcinosis, R-raynauds, E-esophageal dysmotility, S-sclerodactyly, T-telangiectasia)

I have Sclero and everything else, mainly Stage 4 kidney is my worst issue now. I'm seeing a Nephrologist and may have to start CellCept. I'm on Prednisone.

I have terrible swallowing and GI trouble. I take various meds to help symptoms. Your PCP should be able to help manage each symptom.

Best of luck to you. It's not unusual to take decades to get the correct diagnosis and still all you can do is treat the symptoms so the label isn't all we really think it will be.

Bkart profile image
Bkart in reply to Sophiebun11

Hi Sphophiebun11, When I read about yours and other peoples problems it puts mine into perspective!So kind that you and others take the time to help with info, support and smiles - thank you. 🙂

PS I also enjoy hearing about Henry 🐱🐾😊

Thank you all so much. It would be good if the specialists would read theses posts and get a better idea on how things really are, they may learn something!Unfortunately I am not getting any treatment so I do need the label to help with some medication. I have a specialist for my Liver (PBC) but all he says its nothing to do with the liver!

Hi Roseter,

My name is Mark, I’m 61 (if it wasn’t for suffering from Systemic sclerosis I’d feel 25). I have read through all of your posts and all of your replies with interest. It took them EIGHT YEARS to diagnose me.

Your symptoms sound very similar to some of mine. In that eight years I had a couple of close (too close for comfort) shaves In ICU. I had two weeks with “Esenophilic pneumonia “ that was a barrel of laughs. I don’t think.

I could drone on for pages about my medical history. All that would achieve is scaring the …. Out of you. Not my intention. You need to get mean with this disease. Get it before it gets a chance to ruin your life. My GP was the first to admit that I had a more knowledge of the disease than she. GP’s have to see ? 30 / 40 patients a day.

Since this disease stopped me from working I have spent hours and hours researching. I would like to think I know more than the average person about it. I have the time to read as much as I can about all the associated symptoms. How they are treated and so on.

What you absolutely MUST DO is to get a full in-depth diagnosis from a Rheumatologist. If you can get a referral to the ROYAL FREE HOSPITAL

At Hampstead, they are the best in the country. Have a day or two in London.

Get the tests done the go to the West End and treat yourself to a new outfit or something that will make you smile. Even better take your other half with you and get him / her to pay. You deserve a treat. If your GP won’t refer you find one that will. The longer you leave it the more difficult it is to treat effectively. Speed is the name of the game.

I wish you all the luck in the world. Get that referral sorted out TOMORROW please.

All the very best. Good luck. Mark.

P.s.

Please feel free to contact me at any time should you have any questions that I may be able to help you with. Take care. Mark.

roseter profile image
roseter in reply to MFC911

Thank you so much Mark. I will take onboard all that you have said and get on the case!!

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