How long did it take you to get a diganosis?

RATE

Home Forums Diagnosis How long did it take you to get a diganosis?

  • Author
    Posts
  • #27630

    Lauren Tucker
    Keymaster

    Share your thoughts and tell us how long did it take you to get an RA diagnosis?

  • #27633

    Sneed
    Participant

    To know that one would have to know when it began and since RA may have been preceded by some other autoimmune condition which then overlapped with something new that may have been RA, or not, I suspect this question can not be answered for many of us. I know I was initially diagnosed with PMR in 1999 and then palindromic rheumatism and then RA but it all overlaps and is best described, in my opinion, as autoimmune disease. Is X symptom caused by one or another or by several? Unknown and probably unknowable.

  • #27635

    Lauren Tucker
    Keymaster

    Thanks so much for sharing Sneed. We are glad to have you here and appreciate your feedback.
    Best, Lauren (RheumatoidArthritis.net Team)

  • #27638

    Ramomof2
    Participant

    It took me about 4 months. Oddly at my PCP’s office my RF was low, SED rate high (66) and at the time I had slightly elevated uric acid. So even being a 28yr old female. My PCP diagnosed it as gout! My pain was/is excruciating. So after two ER visits, I finally got in touch with a rheumatologist. When they did blood work my RF was then “40”! Im still confused as how that number spiked.

  • #27642

    Richard Faust
    Moderator

    Hi Sneed. You are absolutely correct that autoimmune conditions have an all too common tendency to occur together. In fact. this article from our editorial team looks at RA and comorbid conditions: https://rheumatoidarthritis.net/medical-conditions-occurring-along-with-ra/. Best, Richard (RheumatoidArthritis.net Team)

  • #27657

    Shannon
    Participant

    My PCP just gave diagnosis. I go to Rhuemotologist in a week. I am sure there will be more test but all the information is overwhelming. Ready for some relief. Thanks

    • #27660

      Lauren Tucker
      Keymaster

      Shannon,
      We are here for you to answer any questions. While we cannot provide medical or treatment advice via the internet (for your safety) We are always here to direct you and support you in anyway. Keep us posted!
      Best, Lauren (RheumatoidArthritis.net Team)

  • #27659

    ccrowder123
    Participant

    My wrist was hurting off an on for a few months and I finally decided a doctor visit was in order. I went to my primary for a sore wrist, he gave me a brace and I wore it for 6 weeks, returned and I was referredd for carpel tunnel evaluation. I also did X-rays. At this point I just gave up and convinced myself it would eventually go away. 6 months later I returned because I could not hold a pan, start my car, open canned goods and more everyday things. It was at this point he ran some additional bloodwork tests and my RA Factor was 57. I was referred to a RA and saw him within 2 weeks. I was diagnosed in March of this year and unfortunately still am dealing with wrist pain. I am sure I have had RA for a few years because my hands and feet were always hurting and I was constantly taking alleve.

    • #28430

      ccrowder123, I am sorry you’re still dealing with wrist pain.

      I also found out about my RA through a wrist injury. We found out it was an inflammed tendon but I began to feel joint pain in my elbows and shoulders. But, I suspect I had symptoms long before because I had intense fatigue and knee and ankle pain.

      I hope you and your rheumatologist find a treatment that works best for you! Please reach out if you have any questions or just for support! Good luck!
      ~Monica (RheumatoidArthritis.net Team Member)

  • #27708

    sandymm
    Participant

    I started have wrist pain in July of this year and was finally diagnosed with RA on October 9th. My rheumatologist is trying to find the right “cocktail” to get the inflammation out and yup, I have to admit it, some days the pain just discourages me and I wonder if I will ever be able to use my hands again doing the things I love and being able to schedule any plans at all.

  • #27709

    larrysawyerk9
    Participant

    For your wrists, find a compounding pharmacy, mine is Prescription Alternatives.

    get your doctor to write script for (Diclofenac 10% Lipoderm), apply 4 times a day. I use it when things get really bad. wash dishes by hand in the hottest water you can stand. really do a good job. makes your hands and. wrists work.and fell better.
    do everything you can with your hands, work through the pain.
    be well in mind and body, never give up

    • #28264

      Thanks so much for sharing what has helped you, Larry. Of course, different treatments work differently for everyone and we are glad to hear you are feeling better. We encourage our community to talk with their doctor before trying any new treatments. Additionally, I had to remove the contact information as it violates our community rules. (See them here: https://rheumatoidarthritis.net/about-us/community-rules/)

      Glad to have you here!
      Best, Monica (RheumatoidArthritis.net Moderator)

  • #27710

    sandymm
    Participant

    Thanks for the encouragement, Larry. I appreciate your tips!

    • #28265

      Hi sandymm,

      I am so sorry to hear you feel so uncomfortable. You are not alone, many of our community members also feel wrist and hand pain. (Actually, for me, it was the same way. I was diagnosed with RA from wrist injury!) Since you mentioned it specifically, I thought you might find this article useful. It contains some links and advice in regards to hand pain. https://rheumatoidarthritis.net/symptoms/hand-pain-swelling-and-inflammation/

      It is very important that you talk with your doctor about any concerns or treatments you are interested in.

      Please keep us updated on how you feel!

      All the best, Monica (RheumatoidArthritis.net Moderator)

    • #28266

      sandymm
      Participant

      Thank you for the link. I found it very informative. My RA affects the shoulders, biceps, wrists and hands the most. No, I do not try anything until I talk it over with my rheumatologist . This is all new to me and I also deal with a heart problem. I find it nice that we can all discuss our problems on this forum and appreciate that the moderators watch closely.

      I know that with such pain, there are some of us who will try almost anything for relief. It is good to know that you monitor. I use the cold or hot, depending on the day and stay on the meds. We still have not found the solution that my rheumatologist is seeking, but is a wonderful, caring doctor and that helps.

    • #28431

      Thank you for your kind words!!

      Yes, I agree…These forums are great and for me personally, I sometimes feel very isolated so it’s nice to chat with people going through the same things as I do.

      I really hope you find the right med “cocktail” (I love that term!) for the best relief soon! For me and my rheumatologist, it was a lot of trial and error and I was very resistant at first but as of now, I feel like I’m on a pretty good regime!

      All the best and thank you!!
      ~Monica (RheumatoidArthritis.net Team Member)

  • #27934

    MaxDrave
    Participant

    My wife and I were living in France and were in business there….

    On the Sunday we were cutting back some old growth from a hedge and I caught my back on a very tall stump covered with a fungus… I gained a small scratch and a very large rash on my back which was unusual for me.

    Next morning we woke up, I put my feet on the floor and thought “That’s odd, I seem to have gold balls under my feet?”…. Later that morning we went to see our Dr…. Who it turned out had spent much time with an RA specialist… As soon as I presented my story he said “I think you have RA”.

    Later that day I had the blood test and within 4 days was on medication…. That was a a decade ago, my RA is now everywhere and moves about daily… I use a wheelchair 98% of the time and I am typing this @ 06.35 because I have been up with some sort of neuralgia in my temporomandibular joint on the left side since 04.15 … and they say RA isn’t fun.

  • #28167

    mlw
    Participant

    Years. In hindsight, both joint and cardiac symptoms go back 25 years. But always mild until finally last year I had a very swollen and locked up pinky finger. Clinic tested and found CCP3 was 157. Then I had a dramatically painful wrist flare, after several months on plaquinil and prednisone so started leflunomide. Not terribly fond of leflunomide but no significant flares since starting. I’m TERRIFIED of thinking about the kind of pain so many people suffer and that I might have that in my future! Y’all are troopers!

  • #28169

    MaxDrave
    Participant

    mlw…… This is not medical advice.

    I have had a stent fitted after a heart attack in 2010, a year after my diagnosis for RA

    Myself I used to take Leflunomide (Arava) for about 5 years (from 2011/12) and it was for me, quite brilliant; very little pain, few flares …. Except I have hypertension (high blood pressure) and Arava has a contraindication for hypertension … It took 5 years for someone to work out that is why my blood pressure was through the roof.

    They have now taken me off Arava and my hypertension is now under control… but my RA isn’t.

    Thought that might be helpful for you to know.

  • #28226

    Catholicmama
    Participant

    12 years. Because the first doctor to ever even listen to me left his practice before I could get any test results ( and my health insurance hit the fan for a time around then too). It took 12 years and my ending up in a wheelchair to get another doctor to listen enough to run the tests again. I’ve finally been referred to a rheumatologist but am awaiting their call back still.

    • #28227

      Lauren Tucker
      Keymaster

      Catholicmama,
      So sorry to hear all that you have gone through to try and get a diagnosis. Keep us posted on your rheumatologist appointment and if you need any help finging more in your area here is a link: http://www.rheumatology.org/Directories/Find-a-rheumatologist Best wishes and thanks for being here- Lauren (RheumatoidArthritis.net Team)

  • #28232

    MaryB
    Participant

    I got a diagnosis easily but haven’t found a helping med. yet. I have 5 doctors with different specialities, and am very lucky. They all are compassionate, caring and really listen. But the meds just aren’t working. Have to be careful because I have had Crohn’s DIsease since 1974, and almost seven years ago had a series of mini-strokes and a major one on the brain stem so there are meds for that. Then we discovered 3 heart problems plus a minor heart attack more meds for those. We have to take all of this into consideration with new meds. It has been so nice to have this site to “unload” to, as most people just don’t understand.
    Guess my wish would be for us all to have a miracle and this would disappear. Until then, blessings to all.

  • #28233

    mewhoshops
    Participant

    I’m just in the process of being diagnosed. I was diagnosed by a rheumatologist as having osteoarthritis approximately 12 years ago but for the past 3-4 years the pain has been unbearable at times that would last for weeks to months. I’ve been in horrible pain for the past 4 months but only recently purchased health insurance because I felt something was terribly wrong. Finally made an appointment with a nurse practitioner and she immediately ran blood work. I can’t remember which tests she ran other than lymes which came back negative and then the inflammation test which came back elevated. She is now referring me to a rheumatologist because she feels that I actually have RA. All of these years I thought this pain was osteoarthritis and have been on nothing. In the past when I had insurance I would tell the doctor I have osteoarthritis and they just recommended ibuprofen, Aleve or Tylenol and they didn’t even touch my pain. I’m obviously frustrated because of this had been diagnosed correctly I may have been able to slow the process down a bit by the sounds of it if caught early on. I’m 56 and this pain started at least 15 years ago. It is in both hands, with seized pinky fingers, new pain in thumb/wrist area, feet, hips, knees, neck.
    I do have a question though…I’ve noticed that prior to one of my finger joint nodules inflaming and growing larger I will develop tiny itchy blisters. They don’t ooze but eventually crust over and peel. I’m just wondering if this is a symptom of RA? Has anyone else experienced this?
    I apologize for not knowing the lingo, tests etc…yet. I’m sure I’ll get there and I really appreciate all that I’m learning on this forum.

  • #28278

    1189wup
    Participant

    8 years. My mother went into hospice and I went into a major flare.

  • #28428

    elisa_comer
    Participant

    “Diagnosis” seems to often be an ongoing phenomenon in AI conditions. My initial diagnosis of RA took 4 years, almost 5. RA came in 2009 and we think it’s primary, then along the way came ulcerative colitis, dysautonomia, psoriatic arthritis, and in 2017, Sjogren’s. Oh – I got a pacemaker in 2010, too. So – it’s always something. These things do, indeed, often come in clusters. So, 12 years in, and we’re good to go. Sorta.

You must be a member to reply to this topic. Register Now!
Already a member? Log in now to reply to this topic.