1St rheumatology appt

[Keiraleigh07]

HI everyone. Have my first rheumatology appt tomorrow. Have written all my symptoms down cause I will forget and I now have new symptoms. For the last 3 weeks I have pain in my wrists and stiff fingers and ankles are now hurting. Also feels like tingling like when you come in from the cold. Not pins and needles. Because I try and do bit yoga and pilates I noticed that my arms go numb when I raise them.Is that a lupus or arthritis thing or could it be my heart? I'm worried about this now and nervous about this appt tomorrow. Should I tell them what supplements I'm taking? I'm taking magnesium, omega 3,6,9 and niacin. Been on these for months so can't be those!

[LupusKaren]

Morning Keira, you have got this, by having your notes, you are already prepared. If I can give you a top tip, as time is so pressing for these consultants, try to have the top 5 things that are bothering you, highlighted, and as short a description as you can give, then let the consultant do the rest, as I am sure he or she will want to examine you. In my experience if you focus, on say just one item, and really go to town with it, your other issues may not get addressed, and you come away feeling frustrated. Good luck.

[Paul_Howard Partner LUPUS UK]

Hi Keiraleigh07 ,

How did your appointment go? Were they able to suggest what may be causing your symptoms? Did you tell them about the supplements you are taking?

[Keiraleigh07 in reply to Paul_Howard]

My appointment didn't go well. He asked me about my symptoms which I had written down. He wrote some down and I mentioned the additional symptoms, wrists hurting and tingling hands and feet. His examination involved checking my chest and moved my arms up and down and said there was no swelling which there isn't and no pain that day when he pressed down. Had another blood test and got results today - all normal so no lupus! Stuck still with these symptoms. went Drs this morn about tingling and hands and feet going asleep when I raise them. He was baffled! He suggested another blood test for B12 and calcium. SO down and angry cause feels like I'm a hypochondriac. Consultant didn't any check my movements. Think he was just looking for lupus. Said nothing about arthritis. My mum had rheumatoid arthritis and then lupus at 65. Cause blood tests OK except low c3 and no swelling except my ankles which he didn't even look at. I'm struggling to get out if bath and dress my daughter who is severely autistic. My right hand stiff and hurting now typing this. Could it be another autoimmune disease emerging??. Think I mite be keeping inflammation in check with ginger and turmeric and cannabis oil- not the one you get high on! Thanks fir asking Paul.

[Fennella02 in reply to Keiraleigh07]

Low C3 is significant.

[Keiraleigh07 in reply to Fennella02]

Rheumatologist said he can't diagnose on just that and my symptoms! C4 has to be low too I believe. My Ana was negative as well.

[Fennella02 in reply to Keiraleigh07]

My Ana has been consistently negative for years, sometimes both c3 and c4 are low together but often it is just the one. There aren’t many explanations for low complement levels so it might be worth pursuing. If you’re suffering, find another Rheumatologist.

[Paul_Howard Partner LUPUS UK in reply to Keiraleigh07]

Hi Keiraleigh07 ,

Sorry for the delay in responding to you again. I'm sorry to hear that your appointment didn't go well. If you are unsatisfied with your diagnosis and treatment plan, then it might be best to take Fennella02 's advice and ask your GP to refer you to another rheumatologist for a second opinion. It can often be helpful to see someone who has a specialist interest in lupus and has more experience with the less 'typical' cases. If you'd like to let me know what part of the country you are based in, I could provide you information about any lupus specialists we may know near to you.