Blood works advice

[Sami13]

I have been told I have systemic sclerosis (crest). But my recent bloods also show some other things going on. Can anyone help me understand them. I'm waiting to see prof Denton at the royal free London.

[zenabb]

It's difficult for us to answer your question. I feel it best for you to wait for your appointment with Prof. Denton. Write your questions down on a sheet of paper and take the list with you and show it to him.

[Sami13 in reply to zenabb]

Thank you

[Irene55]

Professor Denton is one of the best doctors for Scleroderma in the world. When you go write down every symptom you are experiencing and discuss these with him.

I went to see him at the beginning of my diagnosis. I wrote everything I wanted to discuss and he asked me about them without me having to look at my list.

But do take a list, good doctors expect it, they know you can't always remember everything when you are in the surgery. Also, you don't want to waste your appointment with him by forgetting anything. As I said, he is one of the best.

[Sami13 in reply to Irene55]

Thank you so much. Good advise

[Sami13]

Thank you for all the helpful info. I have such a range of sysmptoms including raynaulds, face rash, fatigue, chest pain and cough. I have pain all over my body. Just under the skin. I have seen two rheumatologist but they are unsure of how best to treat me which is why I'm waiting for the appointment at the Royal Free to see the sclerosis specialist. I have started to write lists of questions ready for the appointment! It's all very confusing and scary. I should be seen within 4 weeks or so they say !

Thanks again for taking the time to reply

Sam x

[Bellavita in reply to Sami13]

Oh my I'm so sorry you are having so many horrible symptoms with many diagnoses. Have you tried any treatment that helps relieve symptoms or pain? They use steroids, immunosuppressive treatment which involve infusions to stop your body attacking its organs and tissues. Side effects horrible as you know but don't wait along time before trying treatmentsue to the illness stage and how it can progress. I didn't know it was possible to have more than one autoimmune disorder at once. Your symptoms sound like lupus and scleroderma, or possible psoriatic arthritis. Do you get rashes on joints? What type of rashes? Also any recent weight loss or gain?

You have to write a diary of your daily symptoms, with triggers and what helps them. This will be very useful for Doctor as well as what medication works best. How long you have systemic sclerosis. As you know there is a speciic blood marker for this disease. Are you 100% sure, I'm sorry we're the Doctors 100% sure with the scleroderma? It can mimic so many more autoimmune disorders.

You probably know this but I wanted to make sure and help if I could. Also ask them about RSD/CRPS. I am diagnosed with this disorder because of severe pain, and skin will turn cold and blue. I wasn't sure if it was raynauds which now it looks like. Omg the fingers especially tips cause a frostbite pain where u want to chop them off,

Ask them about IVIG treatments. It's basically the safest treatment rebooting your immune system. Just throwing out buts of info. Did they rule out sarcoidosis? Chest X-ray MRI scan or cat scan? I would ask for a PET SCAn too because it will scan entire body to help make a diagnosis.

Sorry if I'm overwhelming just hoping you find the right answer and best treatment.Sending prayers your way. It's horrible to live in pain daily.

Last question, if you linked your account with Facebook is the profile you make on this site private or anyone can see the info? I'm a nurse practitioner who needs much privacy and discretion. At the same time I need advice too. Thanks take care