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Diagnosis

Unofficially diagnosed and searching for information

  • By HeftyLefty04

    Hello all,

    First, I want to say how much I appreciate everyone in this community for providing support and information to one another. The insight is invaluable.

    Yesterday, I went to see my GP for the first time in a month after receiving bloodwork that revealed I have an RA factor of 41.4. He recently changed practices, so the bloodwork was ordered and analyzed originally by the nurse practitioner who took over my GP’s old practice. She referred me to a rheumatologist, but the first appointment I was able to get is not until October 4th. Anyway, my GP saw the labs for the first time yesterday and, after taking into consideration my symptoms, told me that I most likely have rheumatoid arthritis and prescribed me an anti-inflammatory called meloxicam.

    To give you some background, I am a 24 year-old male and the first abnormality I noticed was widespread muscle twitching about two months ago, which initially brought me to my GP’s office. In addition, I have had soreness, pins and needles, and burning sensations in my right shoulder/arm and left leg (radiating down from the hip) sporadically in that time frame. None of these symptoms have prevented me from doing day-to-day activities to this point.

    Right now, I am scared and uncertain of what the next step is. My GP gave me two names of other rheumatologists, but he said to wait it out until October if I can’t get an appointment with one of the others earlier. In the mean time, I have a follow-up appointment with the GP in a month.

    My chief concerns are centered around being able to live a full life and the changes I must make in order to be able do that. Right now I am able to do everything I always have done, and I want to take a course that will allow me to continue living an active and healthy life.

    Thank you again; any advice and/or information is greatly appreciated!

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  • By Tamara Haag Moderator

    Hi HeftyLefty04,

    Thank you for reaching out with your questions and for your kind comments about this community! I am sorry that you are going through this daunting experience of having symptoms that need to be diagnosed and having to wait for months to get into a rheumatologist.

    Before addressing your chief concern, I’ll address a couple of other things you brought up.

    As to your lab results, in case you’re interested in understanding what they’re looking at, this article describes the science behind it: https://rheumatoidarthritis.net/diagnosis/laboratory-testing/. Also, note that some people, myself included, are diagnosed with seronegative RA: https://rheumatoidarthritis.net/living/seronegative-ra-blood-tests-dont-tell-entire-story/. I write about my experience with “normal” labs and then having the Vectra test (which indicated moderate RA disease activity) in this article: https://rheumatoidarthritis.net/living/testing-testing-1-2-3/. I just mention that as some patients and some general practitioners don’t understand that and see blood tests as definitive when they are, in fact, not.

    Also, as you mentioned meloxicam, here is an article about NSAIDs, the type of drug that meloxicam is: https://rheumatoidarthritis.net/nsaids/.

    Now, in terms of your chief concern about being able to live a full life, I’ll address that. First of all, as you say this is an “unofficial” diagnosis, so talking to your rheumatologist when you are finally able to get in is necessary in knowing whether this is RA. If you are diagnosed with RA, I can tell you what my own experience has been like in the 18 years since my diagnosis at the age of 22. Please bear in mind that there have been huge advancements in the treatment options available in the past 10 years, and I anticipate that will continue to be the case moving forward.

    I currently take Plaquenil orally on a daily basis and get an IV infusion of Orencia every 4 weeks. This, along with managing stress, eating fairly healthy, and making sure I get some exercise, enables me to live a fairly normal life. I am the mother of an 8 year old and a 6 year old, I work full-time, I am heavily involved in volunteer work, and I write and moderate for this website. So I do indeed lead an active life by any measure.

    That being said, there are times when I cannot do the things I want to do. At worst, I have flares that render me unable to do much of anything. Nowadays these are infrequent and typically only last a day or two. However, there have been times in my life when my treatment plan needed to be altered that flares lasted much longer and did temporarily put my life on hold. Again, there have been a lot of advancements in RA treatment since my diagnosis, so a diagnosis in 2018 comes with far more treatment options than my 2000 diagnosis did.

    RA is an unpredictable disease, so there are times when the pain, inflammation, and/or fatigue are mild enough that I can put them out of my consciousness. There are other times when they are unpleasant but I can still go about my day. And there are other times when I have to cancel plans or call in sick to work. Therefore, accepting this disease is an ongoing process. In general, RA has not prevented me from achieving any of my goals, but there are times when it has delayed them.

    It is very scary waiting for diagnostic information, so please know that we are here any time you want to reach out with concerns, questions, or just vent. We welcome you to keep us updated as you contend with your symptoms and search for answers.

    Wishing you all the best,
    Tamara

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    • By HeftyLefty04

      Thank you so much for your kind and informative reply! I appreciate your valuable insights and the peace of mind your description of your experience with RA has brought me. I wish you all the best.

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  • By Monica Y. Sengupta Moderator

    Hey HeftyLefty04! (So, I don’t want to assume but I have to ask — are you left-handed?? Because so am I!!) Anyways…

    Thank you so much for reaching out to us. I’m glad you find support through our website!

    It’s really scary waiting for your appointment especially when you might know there is something abnormal happening in your body. I wish I had realized my symptoms sooner. I was diagnosed at 20 years (now 28) and looking back I’m almost certain I exhibited symptoms for at least two years prior. Tamara wrote an article about what to expect on your first rheumatologist visit: https://rheumatoidarthritis.net/living/what-to-expect-at-your-first-rheumatologist-appointment/.

    Honestly, when I was first diagnosed I felt like my world crashed down around me. I wasn’t even done with college yet!! I was a little disheartened at first because I experienced multiple flares that pushed me to acknowledge my new limits. However, thankfully, these flares were due to just finding the right medication regime. Now, I can say, like Tamara that I rarely feel debilitating flares (especially ones that I cannot control with medications).

    I can work full-time (I am a veterinary technician), I have two cats and two dogs at home, I rock-climb regularly and generally lead an active lifestyle. My biggest complaint is fatigue but I can also manage that with a few tweaks to my regular schedule. I still look back at the first few years with frustration because managing my RA was a definite process. But, that’s not to say you won’t find a happy medium sooner or later than me. The second step is to find a diagnosis! (In my opinion the first is going to the doctor when you feel something isn’t right…which is what you did!) It may take some time to get back to an “acceptable” lifestyle (in your opinion) but I have no doubts as a healthy young adult you can find it.

    You are always welcome to come here if you need support or have any questions. Waiting is nerve-wracking so I hope you can get into see the rheumatologist before October!!

    All the best, Monica

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    • By HeftyLefty04

      Thank you so much for taking the time to reply, Monica. I am a lefty as well, by the way! As I await a more definitive diagnosis, your words have certainly brought me clarity. I appreciate the support! I wish you all the best.

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