Doctor suspects Scleroderma - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Doctor suspects Scleroderma

ChunkyDuck
ChunkyDuck

Hi all,

My GP referred me to a rheumatologist at the beginning of March as he suspects I may have Scleroderma. I was supposed to be seen within two weeks, but due to lockdown they aren't seeing any new patients.

I'm starting to feel a little impatient now, so was hoping some of you could please share your experience of what your symptoms were, how you felt, how long your diagnoses took etc?

I've had a look at the NHS Scleroderma page but felt their list of symptoms just doesn't quite match mine, and I know that peoples real-life experiences usually describe it much better.

Thank you.

29 Replies
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I had to go private to get a rheumatologist because of covid crisis and NHS waiting times and he told me i didn't have scleroderma. Yet i think I have 3 of the 5 crest criteria. So I still have doubts and will have to wait for my NHS consultant whenever probable 2021 so it's not easy getting diagnosed but I got no answers to my symptoms from him other than anxiety. Blood samples showed no typical antibodies for Scleroderma or Auto immune disease but Scleroderma has been linked to 9 or 10 antibodies so unless they do very expensive tests which are unlikelydiagnosis may not be conclusive immediately. I wish you well as like me it's a waiting game to see how things progress.

ChunkyDuck
ChunkyDuck in reply to Scotty20

Thank you, do you mind sharing roughly how much it cost you to be tested privately?

And what made you/your Doctor think it might be Scleroderma? Mine referred me due to my ANA test results, no idea what other scleroderma-specific symptoms I might have.

Scotty20
Scotty20 in reply to ChunkyDuck

Still to get the bill but will be around the £200 mark for a 30 min consultation so it’s not cheap. Will need to stay with NHS for future tests and diagnosis’s . Both my GP and consultant rheumatologist don’t think I have scleroderma but I think i have some form of it due to my symptoms so as I will have to see how it progresses and hope they are right

Scotty20
Scotty20 in reply to Scotty20

Hunky Duck what are your symptoms anyway. If you check the SRUK website for CREST and you have two of the five symptoms then experts say this may lead to a scleroderma diagnosis . It seems blood tests are only part of getting diagnosed and it needs someone with good scleroderma knowledge to get to an accurate assessment by matching the clinical symptoms and from what I have been reading many patients don’t find it easy to get that early on which is very frustrating.

ChunkyDuck
ChunkyDuck in reply to Scotty20

Thank you, I'll have to look into it. I'm in Manchester, don't suppose your consultant is anywhere near me?

I've just looked up CREST and don't think I have any of them. I have stiff/painful joints, fatigue, red scaly spots all over my legs and on my elbows, I feel like I've run a marathon/been hit by a train if I walk more than about a mile. I get blurry vision and my head feels very fuzzy quite often. Mouth always feels very dry and throat feels coated, possibly mucus? Also begun having trouble with my teeth, despite not brushing/flossing any less - Gums are often inflamed and I've had to have 2 fillings put in since this started.

Doesn't sound right when compared to the symptoms on the web does it. I hope you get somewhere with it all soon, do they believe anything is wrong with you at all?

Poppy221
Poppy221 in reply to ChunkyDuck

Sounds like you aren't making enough saliva. That can cause dry mouth and teeth problems. You can buy a gel or a spray which replaces saliva. I get mine from Oralieve, I think there are other brands. I get dry mouth a bit - but I am also on limited fluid.

Sjorgens I think it is called.

The matching of the clinical systems by an expert that Scotty20 described is what I was also describing further down.

ChunkyDuck
ChunkyDuck in reply to Poppy221

Thanks for this, it's listed every symptom that I have! Plus some that I hadn't realised might be related. From what you and the others have shared about your experiences, I think it's probably more likely that I have one of the other rheumatic diseases. I'll be researching Sjorgens for hours now haha.

Dorothee
Dorothee in reply to Poppy221

Try as told by doctor place both your thumbs undr your chin and press to make your sciliver glands floe freely. It works for me. Dorothee.

Sorry i have written sciliver glands wrong i think.

Poppy221
Poppy221 in reply to Dorothee

saliva?

Scotty20
Scotty20 in reply to ChunkyDuck

Chunky Duck if you are in Manchester then the Salford Royal Rheumatology dept is the place for you to be referred to. A physiotherapist from the Salford Royal was at the last SRUK annual meeting in Glasgow in 2019 . You can look at his presentation on you tube and his physio advice for scleroderma was very good so that hospital will have the expertise and advice you need.

Scotty20
Scotty20 in reply to ChunkyDuck

Spots on arms and legs and a dry mouth with rough throat and mucus from reflux could be possible be two symptoms of CREST. The big clue with scleroderma is skin changes normally in hands or toes and possibly face and also reynauds which is colour changes in toes or fingers along with tingling or pain but maybe consultants would say differently as I am not an expert but I have skin changes in my fingers with tingling and reflux In throat and tingling in feet with paleness In toes and also severe fatigue and now arthritic pain but so far still in the dark about it so i will keep asking the questions to the doctors

Poppy221
Poppy221 in reply to Scotty20

Would just comment I have Reynauds without tingling or pain. My fingers can turn mauve grey at times, but it is just a slight "your fingers are cold" feeling. I don't get the sudden surge return of blood and the pink fingers and pain, the blood just comes back slowly as I warm my fingers. (And I know I'm lucky.)

Just adding as another example of how varied these conditions can be.

Scotty20
Scotty20 in reply to Poppy221

Yes everyone is different and because I don’t have reynauds to a great degree doctors are dismissing a scleroderma Diagnosis but don’t have answers so i will just have to live with tingling etc and move on

Poppy221
Poppy221 in reply to Scotty20

With tingling, there is a chance that it is vit B12 deficiency. Have you had a recent blood panel on vitamins and minerals?

I had pins and needles in my feet some years ago - pre-scleroderma - and that was what it turned out to be and gone on a month of high dose B12. Likewise with a friend who has all sorts of complicated things wrong, their exhaustion was rendered far less extreme after tests showed they were very low on B12 and they were given mega-doses.

When you are ill, you may not be absorbing all vitamins and minerals properly.

Scotty20
Scotty20 in reply to Poppy221

Thanks Poppy I had my blood tested in June and my B levels were normal but I do have vitamin B complex tablets which I may start to take They have B2 B6 and B12 in them which help reduce tiredness and fatigue however I believe That too much vitamin B can also be bad for you So I suppose it’s a balance. Maybe as we get older the body changes and tiredness is happening more often so I’m now being more careful and resting more often during the day. Structuring the activities during the day with a sence of purpose is important as boredom especially throughout lockdown makes you feel more tired but I will try the Vitamin B tablets again and see if it helps.

Poppy221
Poppy221 in reply to Scotty20

If the tests say you don't need them, then I wouldn't. You are correct about overdoses being a bad idea. It was just worth checking. I have several sit downs a day and a lie down that is sometimes a nap after lunch. It is learning not to keep going for that extra ten or twenty minutes just to finish but to stop and relax. And yes, boredom, when you are not quite tired enough to sleep but too tired to concentrate on anything, even a TV programme - oh boy is that tedious.

Scotty20
Scotty20 in reply to Poppy221

Yes I have been told by my family to avoid Dr Google for looking up my health issues as it’s only going to increase anxiety and create more tiredness and fatigue so having rests throughout the day and staying of Dr Google is highly recommended

Poppy221
Poppy221 in reply to Scotty20

:D

Great advice.

My diagnosis was based on antibodies in the blood test plus tiny broken veins in my fingertips - looked at with a magnifying glass and bright light by a scleroderma specialist. I gather it's very characteristic. There was also tightening of tissue on the back of my hands preventing my forefinger from bending sufficiently to touch my palm and all the wrinkles were gone from my face and smiling broadly is hard work as it is stiff around my mouth.

The symptoms I had going into it was Reynauds syndrome in my hands, acid reflux, lots of mucus in lungs, exhaustion, feet with a lot of twinges and swelling, hands painful for gripping and shoulders tending to get stiff and tight. The hands and feet and shoulders were inflamed tendons. Acid reflux is in a lot of other threads. The feet swelling and mucus in lungs and part of the exhaustion was due to the SSc causing pulmonary hypertension which is quite a rare complication - the pulmonary artery is narrowed between the heart and the lungs.

Bear in mind there is a lot of variation in how SSc presents and it is rare for someone to have every problem.

Poppy221
Poppy221 in reply to Poppy221

Oh - correction - the mucus was partially caused by acid reflux.

ChunkyDuck
ChunkyDuck in reply to Poppy221

That sounds like a really scary complication, are you managing to keep that under control?

I can't relate to the tight skin or the acid reflux, but the joint pain is definitely an issue for me. Did it feel a little better once you tried walking around, but 10x worse once you sat back down? Or was it just constant, whether you were walking or not?

Poppy221
Poppy221 in reply to ChunkyDuck

It's relatively common to have a slight cough from aspirated acid from acid reflux - and not just in scleroderma. The answer is mostly - work in progress.

Regarding feet, my ongoing problems are already existing plantar fasciitis - long pre-dated scleroderma, inflamed tendons and the ball of my feet have lost padding plus there is a bit of scarring in there. So the plantar fasciitis is mostly under control with custom made orthotic insole to tilt my foot and support it (paid privately for that). That can cause stiffness in the morning when I first get out of bed. The inflamed tendons are very much about using them. So I wake up feeling fine, apart from possible plantar fasciitis stiffness, and am largely OK until I have to walk any distance when I get a gradual build up of soreness in the toes and slightly in the joints which gets worse the longer I continue. Immediately feels better on sitting down, though still sore. I do a bit of careful massaging and stretching and put them in either a warm foot bath (or hot water bottle) or cold. But the circulation in my feet is reasonable. What I was advised with hot or cold foot baths was start tepid and increase or decrease the temperature (depending whether you want hot or cold) and see what is safe. Also, don't leave feet in for more than ten minutes, especially if you have it a lot different from body temperature, as you can cause tissue damage. Until recently my maximum distance was 500m, but I am now going a bit further as needed with new cushioning insoles and am also a bit better generally. But feet still get sore.

The single worst joint pain I had was in knuckles on my hands - they were inflamed and I could just gesture - as in move my hand sideways - and it felt like the tendon fell out of position. I'd pull very gently on the finger until the pain eased and then need to straighten it using the other hand then soak it in warm water and wiggle the fingers. It would stay together for a couple of days and then do it again. Since going on hydroxychloroquine and mycophenolate mofetil last year it got massively better. After a couple of months the extreme weakness went away from my hands and I could do things like hold a sharp knife and chop and apple.

Hi Chucky Duck I bet you will soon fine the signs start to match. The blood test in the furture tells a lot of the signs. Just remember we are all different in our own way. We all suffer different things. take care and keep pushing for an appointment. My local rheumatologist did my blood tests many years ago.

I live in Shropshire and lost my rheumatologist a couple of years ago. So emailed The London Royal free and made sure i was not forgotten. I now are seen first there and by one of their doctors that all has clinics at the Queen Elizabeth Hospital Birmingham.

Thank you. I'm in Manchester so hopefully there's somebody round here who can figure it out!

Janpmat
Janpmat in reply to ChunkyDuck

Hi ChunkyDuck, Salford Royal have a great Rheumatology Department, ask your GP for a referral, hope you get the answers you need, sadly you will have to be prepared for a long journey!

I`ve had Scleroderma/ SSc for 10 years now. We all react so differently to this condition. Blood tests can be negative and you can still have it. They can be positive and you have not got anywhere near as severe version that will incapacitate you .

But you do need to think positive, because negativity in your thoughts and those around you will make the condition worse. Guaranteed!

You cannot diagnose this on the Internet or even on what is probably the best forum on our condition, and you will still have to see a Consultant eventually. If you have the money go privately; but you will still in the end, be in the NHS system. I have found the NHS to be absolutely perfect for me. Even with the ups and downs along the way. We are all human after all.

Please, please; keep a positive approach to this illness. You did not cause it. You are just unlucky; and there are so many nurses and doctors and consultants out there to help you.

And you will have to take care of those close to you, as they have no idea of how it is affecting you and your relationship with them . Expect depression to just pop up out of nowhere. For me that was the scariest bit, because then I had to make my wife not fear me as I was going through it. Tough!

John

ChunkyDuck
ChunkyDuck in reply to homeat42

Thank you. This all started after falling pregnant, and now that my Son is a toddler I find it really difficult to keep up with him sometimes which does get me down. I tend to feel very lazy or useless if I have to put him down after only 5 minutes, or if I can't find the energy to take him to the park etc.

Have you found that treatment helped you get much quality of life back?

The treatment I've had has definitely helped get some quality of life back and while I've not been given any new drugs in over 6 months I am still gradually improving. But it was made really clear to me that pacing myself is as important as the medication.

A few suggestions arising from experiences - including my mother being ill for a while when I was in my teens.

Don't expect too much of yourself, you really can't do as much as you used to. Be pleased with what you do manage, not disappointed with what you can't.

Pick activities with your kid that take the least energy for you - perhaps watching TV together or reading him a book, or encouraging him as he thumps plasticine, or playing pat-a-cake. Something where he has your attention and interest and you don't become rapidly wiped out.

If you have friends and family who can help you out with visits to the park maybe you could even talk to them about a schedule - as in could they help for an hour on Friday afternoon, so that is when you both take your son to the park and they do more of the running around and herding and you sit and cheer him on.

It is better to ask for help (if you have anyone to help) than try to do it all yourself and going through boom and bust cycles, and have crises where you've worn yourself out and people have to help. Because if you can plan ahead and have people taking turns to drop by and help when it is convenient to them, it works far better than for you to tough it out until you crash and people have to come because it is an emergency and might be really inconvenient to them.

We are all different with different symptoms. It will be a blood test that starts it all off. It is a worry waiting. But the rheumatologist will help you. As everyone says the Covid has changed everything. I hope they soon help you with your illness.

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