Hi everyone. Hope you are all well. I have my first appointment at Royal Free Hospital London next month. Is there anything I shld be asking. I have my list of questions regarding breathing/dry skin/hair loss / red face./ numb arms.
I dont want to waste the appointment. Thanks in advance
Sounds as if you are doing all the right things. Have you someone to go with you. It is always good to have another pair of ears and maybe take notes, it is difficult to take in and remember everything. oneself. Hope it goes well for you.
Hi,
Similar to SBQ, definately take a family member or a very good friend with you to write down answers to questions or make notes of important facts.
I took my sister & it was invaluable as we sat down and went through all the questions at home.
It's amazing what you didn't listen to properly or missed.
Don't be afraid to ask difficult questions as you need to know at what stage your disease is at & what options are available to you.
Ask if they have any leaflets on the disease and how it can affect various parts of your body.
Always ask for copies of your appointment details. I have two folders, one for information and another for hospital appointments.
There is so much help available with this disease e.g. physiotherapy, phycological sessions ( excellent support helping you deal with a complete lifestyle change), hydrotherapy if available, dieticians etc.
I used hydrotherapy in the beginning as I severe mobility issues due to muscle & weight loss. I had six weekly sessions in a lovely warm pool with the physiotherapy team.
After that I continued each week on self management until my strength improved.
My hospital has occasional conferences on Systemic Sclerosis. I found these really good as it covered many areas. I took a friend with me so they could understand more about the disease.
Your Consultant will tailor any extra assistance required to your individual needs.
My case was extremely severe & progressed rapidly. I was offered everything I needed to help me navigate this new path.
Be open to any suggestions of help & make sure you keep fighting this disease.
Remaining positive on your journey is a powerful tool.
There are times when you feel overwhelmed, it's natural. If you want to cry, cry. Let it all out and then continue to fight.
I hope this reply gives you an insight & helps you prepare.
Good luck and keep us informed of your progress.
This site is very supportive & you can learn a lot about the disease and how it effects people in different ways.
It's also very good just to portray your feelings as we all have moments of need.
I found my first appointment a bit overwhelming and forgot to ask about lots of things! But I found most of the advice I really needed was given to me as leaflets and I was also given an email and phone number for the specialist Rheumatology nurses who are happy to answer any questions. Take your time and don’t worry you will have a team working to give you the very best care.
Thank you so much.
between now and then, if you haven’t already, it’sa good idea to log your symptoms and any (and even) the slightest changes in your body. When you’re in the room, you might forget, so it’s best to have the timeline written down. Often, with MCD, the randomness things that we don’t think about are related. So good to come armed with information.
Also, if you haven’t. I would also get my GP to run an ANA blood test and bring the results to the appointment. This will have any useful markers that the consultants need to be aware of. Each disease has a particular marker (and your diagnosis could be across multiple), so it’s a good base, in addition to your visible examination.
Good luck! You’re in excellent hands.
I always record my visits on my phone. That way I can listen back to it all at home and make sure I haven't missed anything.
Royal Free Hospital 
Chapel Allerton Hospital 
