First Rheumatology appointment since positive test.

[-missymoo]

Hi everyone and Happy New Year 🥂

Just wondering what sort of questions I should be asking my rheumatologist when I see him on Wednesday? Bit of back story; Suffered Raynauds for about 12 years which has got significantly worse now with crippling pain. Always shown slight positive ANA’s previously, but bloods in Feb 17 highlighted a positive anti centromere antibody. Doctor thinks I have early onset limited cutaneous systemic sclerosis, although, many other symptoms such as broken blood vessels on my face have been there for at least a year and are worsening 😫 and also, more recently heartburn.

I’ve had baseline echocardiogram and lung function tests, which I’ll find out the results for on Wednesday.

What should I be asking him? Should I asked for a referral to a specialist team?

Many thanks for reading, appreciate any feedback.

😊

[fairy56]

Hi Missymoo, first of all thank you for your reply. Yes if you can get to see a specialist team, it really is a great help. I dont know where you are in the country, I am being looked after by the specialist team at Chapel Allerton, Leeds, and they are backed up by my local hospital in York, (my rheumatologist) used to work with the team at Chapel Allerton, so I am doubly blessed. Smile and wave, smile and wave.

[LucyJean]

Hi there, good luck for tomorrow. I am sure you are feeling apprehensive, as we all are when we go to any hospital appointments, but especially if it is a first appointment. It is good to know that you are being seen in the early stages when, by the sounds of it things have not progressed too far. Regarding what to ask. It is helpful to understand what is happening with your blood markers so I would ask the person you see about those. Equally they should be telling you about your ECHO and Lung function tests. They then should be discussing the best plan of treatment with you given those results. I would expect them to talk about the potential benefits of medications to treat your Raynauds and reflux also discuss whether you need immunosuppressant therapy or just symptom relief at this stage.

If at any point you feel that you are not talking to someone who has good knowledge of scleroderma, and they are unable to answer your questions about the disease or provide a clear treatment plan, then I would ask them (or your GP, who is really the person who holds the budget for where you have your care delivered) to refer you to a specialist team. This is likely to be Chapel Allerton in Leeds in the North, Manchester also has a specialist service and the Royal Free in the South. The Rheumatology Unit at Bath is also very specialist. I live in Norfolk and the team there are very good, so sometimes it is knowledge of other local services that helps. It is helpful if your local hospital can provide your care as if you need to go in for treatment or go for a number of tests or treatments you don't really want to have to travel for hours as that is stressful and physically demanding, which is not what you need when you feel in pain and fatigued. So unless you were very concerned I would try and remain with them.

I hope that helps

All my best

Lucy xxx

[PaleIndian2 in reply to LucyJean]

I was seen for years by my local rheumatologist but he was only a general one and to be honest for me a waste of time. I asked him politely if he could refer me to a scleroderma specialist and he happily did this. I was given the choice kf the Salford Royal or Aintree hospital. I chose Aintree and have never regretted my decision. A proper specialist knows what questions to ask you to get a better understanding of how it is affecting you personally. It was such an eye opener after having years of how are you well see you next year.