Still no diagnosis :-(

[krillemy]

Well I do not have arthritis - joints are clear after ultrasound and the pain, stiffness and flu symptoms must come from some other autoimmune disease in nerves and or muscles. So I am off to the neurologists again - going crazy after more than 2 years without a diagnosis. It is almost good with the subcutaneous swelling around joints as it at least is a clinical sign that something is wrong, and not just in my head as I sometimes think they think, the doctors. The have no answer though to what is causing it - sorry for just getting my mood out. Thank you for all support here in this site.

[Hidden]

I am so sorry you are still struggling for a diagnosis. Have your symptoms changed at all? I still have a diagnosis of undifferentiated inflammatory arthritis and last year at diagnosis the joints were painful stiff and red but no clinical synovitis on examination or ultrasound but the consultant said it sounded and behaved so much like inflammatory arthritis he was fairly sure. Now I have obvious clinical synovitis with swollen joints. They haven‘t bothered repeating the ultrasound.Maybe things will evolve and make it clearer?

I really hope you get a quick referral and appointment with the right person so that you can move forwards!!!

Take care x

[krillemy in reply to Hidden]

Thank you

[Greencat96]

Sorry to hear this. I understand your frustration. I have had symptoms for 18 months and still no diagnosis. I have pain but no swelling and redness. I had a ultrasound on my hands and feet that were clear.

My blood test show abnormal level of inflammation though so it helps me to see it’s not all in my head. And although I have had infrequent bad flare ups. When they happen I can’t walk or use my hands. So again it helps me understand I am not making this up.

It’s complicated because one part of me doesn’t want to be ill but it would provide strong relief to know what’s wrong with me.

In addition, it’s really hard to explain to others you are not well when you don’t have a diagnosis. Pain and fatigue are invisible and it’s difficult for others to understand how hard it can be.

Patience is needed but it’s so so hard😫

[krillemy in reply to Greencat96]

Thanks - and I am sorry that you also in this mess. At lest you have the inflammatory blood tests as you say, because, not only myself, but i suspect also some doctors are always thinking its in you head when they cant find out what it is. I am on my 3th year. They have been focusing on different types of myositis due to the hand and foot pain and general weakness, but the blood tests are normal - maybe you should mention that to them in you case? Worth trying - good luck

[seasider18 in reply to krillemy]

I take it that you are not taking Statins ?