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I think most if not all research is for a medicine to help. I do not know of any research being done looking for a cure. If you know of any please correct me.
I’m in my car Jan so maybe i can add more to my reply later from the computer . But there definitely is.
I feel very strongly about this issue too because I have a son – I mentioned this to my Rheumy who expressed that his chances are good because he is of course a male. However men do have this disease so I shall be vigilant.
In my own situation I experienced awful pain in my knees as my first symptom which my wonderful GP picked up on and ordered blood work. I was positive for RF and ANA from this I was referred to a series of Rheumatologists who were frankly horrible. Fortunately I found my current Dr who is truly wonderful. He listens – and is working hard to find the right meds for me.
What though if I had not tested postive??? Would I have fell through the cracks?
Would I have suffered joint damage and erosion for not being treated on time?
I still have a reduced mobility largely due to fatigue, stiffness and joint pain. It could be so much worse if I hadn’t had the good fortune of a GP who listened to my complaints of painful knees on waking and difficulty walking in the am.
Surely families where the risk of auto immune diseases are higher than the average population should be tested? Cancer screenings are viewed as important so why not. My own sisters have Lupus and thyroid problems.
Catherine,
Im so glad you persevered until you found a better doc. I just replied to someone else about that the other day. It’s so hard, but it’s what we have to do.
Our pediatrician was good to listen to symptoms and run labs for my child. I feel the same as you said “vigilant “
Well Kelly one of the rubbish Rheumatologists sneered at me. Fortunately my husband was with me and made sure I reported this to my GP who then sent me to the wonderful Rheumatoligist I see now. I probably would have believed the rubbish Dr and given up for awhile!
I “knew” I had RA and had a grandmother with severe RA. The doctor I went to at the time, let me suffer with swollen hands for a long time (about 2 months) before I got a rheumatologist referral. I did not know to get a second opinion. I am doing well now after 2 knee replacements, and biological drugs but wish so much I had an early diagnosis.
I share your concerns. I have strong autoimmune disease family history, and I have RD/Lupus overlap. I also have a daughter. I test negative for the RA factor, but I have tested positive for anti-CCP in the past. Strangely, my recent anti-CCP was negative, despite visible inflammation. This disease is frustrating and mind-boggling when comparing lab results with symptoms! Actually, if you were to look at this month’s labs, I would be cured! No CRP, ESR, etc, etc. Ha! Yet I score in the high-moderate range of the Vectra-DA.
thank you for sharing Shannon. It helps future readers for years to come.
Also, I learned the hard way labs can make mistakes – once I got a negative ccp lab & my doc knew it was wrong – it’s always as high as the lab estimate goes. So we re-did the test 2 wks later at a different lab company – and it was as always, as high as their lab counts. So that negative one was just done incorrectly – many opportunities for human error in the process actually. So next time yours could be positive.
Hi, I”m very new in the RA world. 38 year old female. I had a major reaction with both thumbs and a couple fingers 2 weeks ago. my first BIG red flag, but looking back, have had some painful nodules on my toes here and there for a few years, and stiffness and aching for years. anyway, just had my RF, CRP and EST back. all in normal range, but have been very anemic for 10 years despite supplementing. I’m confused and honestly frustrated and not sure where to go next as I was getting my fighters ready for RA after identifying my symptoms. Like mentioned here. I don’t want to wait until I’m truly dibilitated to try to get on top of this, if RA Is what might be happening here. Any input would be greatly appreciated!
Pre-screening would have been fantastic. I am trying to be a case of relatively early diagnosis now, but it’s tough. After 8 days of swelling in my hands and feet, I went to my GP concerned about RA because my mother has it. She told me that it’s not RA because I don’t have morning stiffness, but that she’d give me a rheumatoid factor test to put my mind at ease. It came back negative, which is no surprise, as my mom is seronegative. I’m now seven weeks into swollen hands/feet and minor pains in my fingers, wrists, elbows, knees feet, and ankles. After visiting my mom’s out-of-network rheumy, his notes convinced my GP to send me to a Kaiser rheumy even though she says “Rheumatoid Arthritis test was done and was negative,” by which she means the RF test. I don’t know how long it will take to get into that, but I’m hoping for an anti-CCP test and sed rate test soon. I watched my mom go through three years of swelling, pain, and excruciating physical therapy before she was diagnosed, and I don’t want to be that patient. Reading the onset stories on this website has convinced me that it is very likely that I have RA, and that I’ve had it for years – the elbows that hurt after exercise, the knee that hurts when I walk downhill, I gave up gum because of TMJ, the tendonitis in my forearm, and recurrent bouts of what I thought was “mouse shoulder” but the rheumy says is actually caused by my neck. The theory of screening and early diagnosis is great, but trying to get doctors to do it is like pulling teeth.
Dear Melly, I hope you can get the tests and treatment you need asap. You’re doing such a good job educating yourself. I’m sorry ignorant doctors make it so much harder.
Give my love to your mom.
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