Proof is in the pudding

[Tessie62]

I've seen two if not three Rheumatologist, two Orthopedist, and my Nurse Practitioner. No one will give me anything or do anything for me as long as my test read negative or normal. My right hand hurts to the point of not being able to focus at work. Does anyone have the magic words or phrase to use/say to get some help?

[Hidden]

SERONEGATIVE Rheumatoid or other connective tissue diseases would be my choice of word. It would be worth posting this on the NRAS community where many are seronegative. It would also be well worth showing this photo and others like it to your doctors.

[Tessie62 in reply to Hidden]

Thank you, thank you, thank you, Twitchytoes! Knowing there's a word for why my labs read negative when all signs prove otherwise.....

Thank God! And thank you too.

[Hidden in reply to Tessie62]

You’re most welcome Tessie62

[leslieliesel]

Oh Dear...That looks painful

[Tessie62 in reply to leslieliesel]

It is. And very frustrating.

[Silvergilt]

Definitely say seronegative RA. It’s what I was diagnosed with and why I’m getting treatment after years of not getting anywhere.

[MissFG]

Until you do get treatment try rubbing ibruprofen gel or deep freeze cold gel as it helps me. I had to beg my rhuemy to treat me scared I’d end up in a wheelchair as I struggled walking and especially stairs. She then prescribed me with hydroxy and I got an MRI which showed inflammation. But it took me breaking down and asking for help and not to leave me again another 3-6 months as I felt I was getting worse.

It is a long slow process but that doesn’t help when your in pain. Saying that sometimes no treatment is better than the wrong treatment. I had numerous steroid injections in a finger joint and it’s now permanently damaged by my GP. But you have obvious swelling so be firm but polite and ask specific questions: What do you think is wrong? What treatment can you offer me? Etc

Btw keep the joints moving and exercise them or they stiffen and seize up which is worse. Good luck x

[Tessie62]

Thank you MissFG! Just to get this straight you had labs too that kept coming back normal or negative...and if so, how many years did this go on before finally getting an MRI? I tried a hemp rub on my finger and knuckle today. That seemed to help a great deal. My doctors office left a note in my patient portal saying the Mayo clinic would be soon be contacting me to discuss an appointment. Do you think that would be necessary? I know you don't know my case...so far all conventional doctors haven't been able to offer any help.

[Tessie62]

Small update. The rheumatologist I saw that dropped me because all my test came back negative? He gave my name and number to a pain clinic. They called, left a message. I won't be returning that call. There's my sign! Next!!!

My nurse practioner referred me to a Mayo Clinic. Much to my dismay it was ONLY for the treatment of my hand. I called them back and was advised to have my NP refer me to a Mayo Clinic specializing in undetermined or unspecified autoimmune disorders. Stay tuned.