Feeling a little lost and confused

Hi everyone i was diagnosed with systematic sclerosis and raynards this time last year iv seen my consultant twice in this time the first time he was quite helpful but the second time no help at all my own gp has been helpful trying to explain everything to me but im still confused at what is happening to me i have joint pain everyday dry eyes and mouth i have trouble swallowing it's starting to affect my bowels iv been reading up on what it actually is what iv got im reading there is two types but my consultant has not told me i feel as though iv been told what iv got and that's it iv been sent away to deal with it if it wasn't for my gp i wouldn't have had any tests done iv had a full lung test ultrasound scan and plenty of blood tests any help and advice would be greatly appreciated

21 Replies

  • Have you been assigned a specialist nurse that you can phone? There should be someone in your local hospital group that can explain what you're going through. Where are you? SRUK org will help you find people with lots of advice locally.

    You need to explain how you feel to your consultant again and write down all that's worrying you. If then no help ask your good gp to refer you to Royal Free London ( I've never had to go there, but all on this forum rave about the care there).

    Can't believe how much better I felt a year after diagnosis . So should you...

    No need to feel lost, but sorry you're not receiving the help that should have been in place locally for you Rachfen

  • Sounds like you've had a bad time. Right, get on the internet and do a bit of research on the leading specialists nearest to you. Also check out the SRUK website. I would suggest sooner rather than later!

  • Please don't despair, I can only agree with the other posts find a specialist hospital, I go to the Royal Free in London they know everything about this condition and I felt exactly like you when I was diagnosed.

    SRUK are really good and have people who you can share your fears with.

    Let us know how you get on, this is a really good site and please don't feel you are alone.


  • I`m pretty new to the site and can only agree with other posts. You should have a specialist nurse you can phone and express all your fears too. All I would say is research that's all I`m doing at the minute to try and understand what`s happening to my body.

    Let us know how you get on.

    Kelsey x

  • Hi thank you for all the replies iv not been assigned a specialist nurse i only really see my gp about what is going on it was him who gave me the details to this website because i told him i still don't know very much about what iv got a year after i was diagnosed im in Leeds so London is a little far away for me to go but iv seen some of the comments about it i just feel as though i go to my gp he gives me medication and that's it he doesn't know very much about it

  • Hello, If you are in Leeds you will be very well looked after at Chapel Allerton Hosp, part of Leeds Teaching Hosp. The leading Specialist Rheumy is Dr Maya Buch. They are a research centre for Scleroderma, I used to live in York and went there for many years. There is a specialist nurse help line, which you can probably get from SKUK. Ask your GP to refer you straight away.

  • Hi im under chapel allerton hospital under dr del gado iv seen him twice but to me isn't any help my partner came with me to my appointments and even he said we were given no more information about it

  • Hi Rachfen, I can only say that on the occasions I have seen Dr del Gado and his team (I have only been under the care of Chapel Allerton for 2yrs) the more questions you ask, it does help. Were you aware there is a support group held at Chapel Allerton once a month, that coincides with the clinic, ask the nurses next time you are there when the next meeting is.

  • Hi no i didn't know there was a support group that would be a great help iv been under the hospital for just over a year now i think i need to write everything down and then when next appointment i can go by my list of questions x

  • Hi Rachfen, I am under the care of Chapel Allerton hospital. I have been seen by Professor Buch, Dr del Gado and their fantastic team, they are within the Rheumatology dept, but they specialise in Scleroderma and Raynauds, ask your gp to refer you. I am also under the care of York district hospital who also take great care of me. They see to it that I get all the necessary tests either at YDH, LGI or St James.

  • Hi im also at chapel allerton hospital i have been seen twice by dr del gado the first time wasn't too bad but the second seemed a waste of time the only test he sent me for was on my lungs he's never asked about my swallowing or my bowels only once mentioned my joints everything i know about what iv got is from me reading up online

  • Oh Dear, I found Dr Del Galdo extremely caring, perhaps you need to make a list of your concerns, swallowing, bowels, etc. and present them to him. There used to be a self-help group which met on 2nd? thursday of the month just down the corridor the outpatients. Perhaps your could contact the scleroderma help line at Chapel All to see if they are still meeting. I am now seen at Salford Royal by Prof Herrick and her Scleroderma team and have found them VERY thorough, but perhaps this is too far for you to travel?

  • Hi Rachfen...you say that you saw a consultant? Was this a rheumatologist? If so, then you should have been given a follow up appointment with this doctor. When I was diagnosed with systemic sclerosis I was given hospital treatment of cyclophosphamide infusions over several weeks then put onto medications to continue my treatment...with follow up appointments ongoing. If you are only seeing your gp I am a bit puzzled by this. I hope you get this sorted out and ask your doctor about referral to a rheumatologist if you haven't already. My Ssc. is affecting my internal organs..my lungs especially so I also have to see a different consultant in this respect ...so it is all connected to hospital visits...please make sure that you are receiving the correct diagnosis and treatments going forward. Hope you get proper treatment pet...good luck.

  • Hi yes the consultant i seen was a rheumatologist iv seen him twice first time he asked a few questions and took blood sent me for lung tests then second time he looked at my hands and check my breathing

  • Hi Rachfen, im Sharon from NIreland. Plz dont despair, easier said than done. I was diagnosed 4yrs ago with systemic scleroderma. I was refered to a rheumatologist by my gp. I c her every 6mnths. There r no specialists in this part of the country but i have done research on SRUK site and kept in touch with quite a few on this forum. This contact is invaluable. I have learnt quite a lot about this illness on here. Its all a learning process for me, even after all this time. My illness started off with raynauds and progressed to present day probs, lung fibrosis, osteoporosis, reduced kidney function, and oesophageal probs. I had an oesophageal dilation done 2wks ago due to probs swallowing and food getting stuck. It gave me a lot of relief. I have regular, lung function tests, echocardiograms, bone density tests, chest, lung and kidney scans and get my bloods checked every month. My meds r prednisilone, methotrexate, amlodopine, calcium,folic acid and esomoprasole for acid reflux. All seems to b working well at the moment, i'v had a bad mouth infection we think caused by the methotrexate but an increase in folic acid dose seems to have helped with that, although took about 6wks to get better. Some of the things u read can b very scarey but keep ur chin up and take each day as it comes. I am still fit to wrk approx 20+ hours per week in a busy canteen so not all bad. Im just so thankful to b able to put my feet on the floor and get out of bed each day! Take care of urself. God Bless. X

  • I am in USA, and had similar experience in terms of little helpful information or support from rheumatologist. My internal medicine physician has been far more on top of my care.

    This group has been wonderful for being able to talk to someone about what is going on.

    Hang in there--we've all got your back!

  • Your gp should refer you to a lung consultant in Leeds. There must be one, there is one in Chichester. She has in turn referred me to the Brompton and Papworth. Tell your gp to do this, I rarely see mine, it's a hospital job.

  • Hi Rachfen - I'm so sorry you're dealing with all of this. The single most important thing you need to do is make sure that you are being cared for by a scleroderma specialist. A primary care doctor or general rheumatologist will be unlikely to have much, if any, experience with scleroderma and it is an extremely complex and fairly rare disease. Proper early monitoring and treatment can greatly impact disease progression and outcome. If your current rheumatologist is not a scleroderma specialist, devoting the bulk of his practice to this disease, ask for a referral.

    There are two main types of systemic sclerosis, limited and diffuse. BOTH types of SSc are systemic and involve internal organs. The designations of limited and diffuse refer to the extent of skin involvement, with limited SSc affecting skin of the face, hands and arms below the elbows, and feet and legs below the knees. In diffuse SSc, skin involvement extends to the trunk and upper arms and legs. Sometimes skin changes may be delayed until later in the course of the disease, and in rare cases may not happen.

    Do you have copies of your lab reports? The individual scleroderma-associated antibody you tested positive for may reveal which form of scleroderma you have. If you have results and want to post them here I can help you to interpret them, and if you don't have copies of your test results you should request them. Get in the habit of always getting copies of any and al medical results and reports and keep your own file.

    At a minimum with a diagnosis of systemic sclerosis/sceroderma, you should be having regular pulmonary function tests and echocardiograms. Baseline testing at diagnosis is typically standard with interval testing ongoing for comparison and based on symptoms. With your swallowing difficulties, your doctor should consider ordering an esophageal manometry test. Are you digestive issues being evaluated and treated? Are you on any medications for your disease, such as Plaquenil or possibly Cellcept? Dry eyes and mouth symptoms are common with scleroderma and Sjogren's often overlaps. There are prescriptions and OTC drugs that can help with symptoms, has anything been offered or recommended?

    I hope you are able to get the help you need soon. Please keep us posted on how you are doing. Best of luck to you.

  • You need to go to the royal free or a systemic sclerosis specialist.

  • My rheumatologist is excellent and really knows her stuff as regards S.sc. ...I am awaiting referrals..already had barium meal testing for problems with eating and swallowing so have to get another test done for same as it is not getting any better swallowing just now...also have usual follow up appt. for lung function test ..I also get regular monthly blood tests done for mycophenalate use. Helps when you get proper treatment and you don't feel so alone.

  • I think the consultant leaves it up to you.if you want to know more they answer your questions,if you would rather just have your treatment that's ok to.I like to know everything about everything,but I have a friend who would rather do as she is told and not know the worrying details.it's just a matter of communication I suppose

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