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So many doctors, so confused. Please help.

  • By clinn236

    I usually avoid forums because I have found that strangers are mean on the internet, but I am so frustrated and at the end up my rope I just don’t know where else to turn.
    I’ll try to make this as short as possible.
    – 29 years old. Married. No children, no pregnancies ever.
    – Joint pain started about a year and a half ago. Started in my hips and fingers, then kind of hopped about. Tingling hands, wrists, fingers, feet. Painful shoulders and elbows. Also developed Reynaud’s. Everything seems to get worse with stress.
    I thought it was because of my 1.5 hour (each way) commute to work, but it didn’t go away after I stopped commuting so I went to my GP.
    – GP did some blood tests, assures me no lupus, no leukemia, etc. Found positive ANA, sent me to rheumatologist, at which point I immediately found a new GP as well because he messed up my test results and clearly did not care about what was going on with me.
    – First rheum diagnosed fibro on first visit, sent me to a physical therapist who did a very awkward session and then told me that fibro is not real and he could not help me because it’s all in my head. Meanwhile $400 bill from the rheum confirmed that they had lied about being in my network, so can’t go back there.
    – New GP is awesome. Does more blood work, finds positive ANA. Tests for Celiac are negative and no allergies except to cow’s milk. Refers to another rheum.
    – First visit, doctor takes history which includes cousin with juvenile RA and NO LUPUS ANYWHERE. Orders blood tests and x-rays. Tells me that I “definitely do not have fibro and may develop RA due to family history.”
    – Next appointment, same clinic, different doctor. Bloodwork returns, still positive ANA, but no markers for anything else except some borderline anemia. X-rays are normal. everything else seems normal. Doctor tells me that I may be “developing lupus.” He actually says “someone your age with these symptoms I would not diagnose RA.” Prescribes prednisone.
    Here is the thing:
    – I have NO SYMPTOMS OF LUPUS besides joint pain. No rashes at all, ever. I have never had a rash in my life. No sensitivity to sun. No hair loss.
    – My joint pain is mostly symmetrical with the exception of my left knee that lately seems to be much worse than my right, but both have some pain. I have Reynaud’s.
    – Talking to my mom while upset after latest appointment, she tells me that both my dad (who is deceased from cancer last April) and his sister (my aunt) had/have RA. I had NO IDEA. I haven’t been keeping her apprised of my health issues over the past year because my dad was very sick with cancer and I didn’t want her to worry about me, too. Apparently that was a huge mistake. I knew my dad had diabetes, but this whole time I thought his arthritis was just osteo like my mom has. I just saw my aunt two weeks ago and she can barely walk, but I had no idea that she has RA, too.
    Mom is trying to get me documentation on my dad’s RA diagnoses because I kind of gave the doctor a hard time about lupus (everyone has been telling me for the past year that I definitely do not have lupus and now he goes and picks on lupus because of my AGE?) and I am afraid that he will say that I am just trying to get out of a lupus dx. He hasn’t dx’ed anything yet, prescribed low-dose prednisone and wants me to call him in two weeks to see if it helps.
    I know that auto-immune stuff is notoriously tricky and that heredity for RA and other conditions is controversial, but I can’t help feeling that this has to be relevant. I am just so at the end of my rope here and I know I really shouldn’t complain because some people take YEARS to get anyone to take them seriously and have much worse symptoms, but I just want to know what is wrong and I feel like the close family history has got to be relevant.
    I don’t really know what I am looking for here. Just support and kind words, I guess. Or suggestions? I don’t know. Does anyone have experience with family histories or a doctor telling them that they are “developing” an autoimmune condition but don’t actually have it yet? I am so confused and I am really exhausted with the merry-g-round of doctors but I really disliked the guy I saw today and don’t particularly want to go back to him. I just feel overwhelmed and I don’t know what to do.

  • By ManofMaine

    Hey clinn236,

    I’m sorry to hear about everything you’ve been dealing with. It sounds a lot like what I went through when I first started getting symptoms (especially the tingling and Reynaud’s). My first doc also told me that I probably had fibro, but I knew that wasn’t what I was experiencing (26 years in nursing). I will tell you that it can be a long road – it gets better in some ways and worse in others. It took a few years for me to figure out which lifestyle changes actually made a difference for me (staying active, but not too active, having a good sleep routine, taking the right meds, and building a support network).

    I’m curious about your symptoms, have you had a flare-up? They are pretty easy to spot once you know what you are looking for. How about redness/swelling around joints? Any fever? Flu-like symptoms?

    A helpful thing to do is to keep a journal with short entries every day. Take your temperature and write it down. While I was figuring out what was going on with my body I noticed that on my worst pain days my temperature was slightly elevated. Also, when your joints are hurting more than normal, have someone close to you feel them for warmth by comparing the way the skin feels to other places that aren’t over a painful joint. Note that also. Doing all this really helps when you talk to your doctor since RA can be so cyclical and come in waves it can be hard for a doctor to really zero in on it. The ANA blood test is a good first step and elevated levels point towards a possible auto-immune condition.

    Anyways, just wanted to say that you can still live a great life! You’ve just got to find what works for you and put the time in to document everything at first. Best of luck!


  • By ManofMaine

    Oh yeah, it also helps to not push an RA dx on your doctor. Not saying that is what you’re doing, I just know that I probably came off a bit pushy with my first doc and it seemed to put him off and slow everything down (even though i KNEW what i was experiencing). In my experience a lot of doctors listen to you less if you come off as knowing what you have.Just carefully document your symptoms, be consistent, and let the doc work his/her way through the possibilities. Most doctors want to rule out everything else before they land on RA since it harder to treat and is chronic.

  • By Richard Faust Moderator

    Hi clinn236. Sorry to hear that you are having these diagnostic issues. RA (and other autoimmune conditions) are notoriously difficult to diagnose. This article from our editorial team takes a closer look at the diagnostic process:

    You mention learning that there is more family history of RA than you were originally aware. This may be relevant to your doctor. This article looks at family history and genetics:

    Please know that we/this community are here for you. Please let us know how we can support you or what questions we can help you with as the process unfolds. Wishing you the best. Richard ( Team)

  • By clinn236

    Thank you for the helpful replies, everyone. @manofmaine, I have been keeping a diary for the past couple of days and after looking more closely for symptoms I have noticed swelling in my hands and feet and warmth in the joints. I have worn a small ring on my right pinky finger every day for years and have recently starting getting a blister under the ring. I thought that it was because of swelling over the summer and wearing the ring in the pool maybe causing irritation from the chlorine but it was about 60 degrees outside yesterday and I noticed the swelling in my hands after taking the dogs for a walk and being out in the chilly weather for about an hour.

    I also have stiff joints after periods of inactivity, which have been going on all summer if not longer. I am a PhD student so I spend long periods of time sitting and reading. I never noticed stiffness being a particularly “morning” thing because I literally get out of bed and go straight to my desk that is about 10 feet away and then work for a good 3-4 hours before getting up again, at which point my joints definitely are stiff and painful. I haven’t noticed any fever but I also haven’t really looked for it. I’ll try keeping an eye on my temperature. As for flu-like symptoms, I sometimes feel light-headed but I always attribute this to the fact that I am terrible about drinking enough water.

    Additionally, I got my historic lab results yesterday and noticed that my RF levels have gone from “less than 4” when I was tested in August 2016 to “11” on the last test just a couple of weeks ago. ANA levels have also risen a bit in the past year and have been “positive” the whole time. I know that other tests like CCP are better for RA diagnoses but I don’t have historic data for those and as of now everything is technically “negative.” I just think it is strange that this doctor didn’t mention the 10 point rise in the RF level and decided to pinpoint lupus because of “my age” when I have literally zero symptoms besides joint pain and nothing else was out of whack on my bloodwork (no weirdness with proteins or WBC, no anemia). I understand the reluctance for a firm diagnoses before ruling everything out, but the doctor was also condescending and rude about the whole thing. I made an appointment with the last rheumatologist in our area that I have not yet tried (there are only 3 in our city), but couldn’t get in until December.

    Until then I guess I will take the prednisone and call the current doc in two weeks like he asked, and will send him the family history once I have the documentation. At that point he might either actually consider what I have to say or he will continue to be condescending and dismissive and I will have to move on.

  • By clinn236

    Oh, and something else that I have noticed lately is that I am having difficulty holding my phone, a book, or my Kindle tablet in my hands for any period of time. If I am texting or looking at something on my phone I have to constantly switch between hands because my fingers get very tired and stiff and tingly after just a few minutes. I eventually have to just put whatever I am looking at down because I can’t hold it anymore. Typing for long periods of time also seems to bother my fingers.