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Diagnosis

Undiagnosed and Concerned

  • By Emmu

    Hi there, new poster here. Just wondering if anyone could give some advice or support, as I constantly get the impression from doctors and those close to me that I am not taken seriously. I guess starting from the beginning would be best, so here I go.

    I am 17 years old, and eight months ago I was working my second ever job as a waitress in a retirement home. At this time I had also just begun taking a mixture of online and college courses at my local community college, and was also an active hip hop dancer at a dance studio in my town. As you can imagine, I was quite busy. Prior to this time, I had been a long time digital artist, thespian and gamer. However, in October of last year, I began noticing weird things happening while working 2 hour no-break shifts at my job (sometimes working two or three of these shifts in a day.) When picking up trays and serving food, my hands would become abnormally tired very quickly, to the point of it being painful and getting the feeling that I was going to drop it. For the first two months of this happening I ignored it. I have always been the kind of person to avoid admitting I have a problem to someone, and I usually just want to ignore it until it goes away. But it didn’t go away, by December I thought there might be a chance that I need to do something about it. At this point I was dropping things, like cups and mugs, on a regular basis. I felt clumsy, and incapable. I was also getting frequent pain outside of working. Seemingly random sharp/dull pains that would come and go in different parts of my hands. So, in the beginning of December I made an appointment with my primary care physician. In this appointment, all I was told was to work less, and that I probably had carpal tunnel in both of my wrists. I took a written note from my physician to my work, and stopped working at this point to hopefully heal whatever it was that was going on. I also began physical therapy after this point.

    January rolled around, and by this point I didn’t feel that it was any better. I was doing strengthening at least every other day as advised by my PT, but I still experienced pain. There was a point in December where I was working on an art piece and my drawing hand seized up and I had to stop and take a break from the pain. I scheduled a new appointment with my doctor, and this time I was referred to an Orthopedist and had x-rays taken. At this time, my x-rays came back normal, and all the Orthopedist had to say was that I should come back in 6 weeks for an mri if it wasn’t better. A month after this, still having continued with PT, it still wasn’t better. I went back to my primary care again, and my physician noticed that my hands were slightly swollen while she was looking at them. Concerned by this, she said that it may be RA, and did a blood test. My results came back that I had a “high” ANA rate (1:160, which I am aware is not incredibly high) and I was also slightly anemic. Just to make sure, my physician referred me to see a rheumatologist. (In the mean time I went back to my orthopedist who just told me to come back again in a few months for an mri if it wasn’t better for a SECOND time. I also continued with PT.) When the rheumatologist appt rolled around, I got no new information. By this point, I had developed a painful lump at the base of my thumb that has since been explained as the joint sliding out of place, and I also had an equally as painful (still unexplained) smaller lump on the highest joint of my pinky, preventing the finger from bending straight. The rheumatologist explained it as Reflex Neurovascular Dystrophy, a diagnosis similar to amplified pain syndrome, but not nearly as well known and not researched as much. Keep in mind, I have also experienced less frequent but sometimes intense pain in my knees, toes, elbows, and shoulders. I did not agree with this diagnosis, it didn’t explain what I was experiencing, and there was no ‘solution’ or helpful treatment other than more PT. I went out of this appointment in tears. I felt like no one I was seeing understood what I was experiencing, and wasn’t giving me anything helpful to figure it out. The only medication I have ever been advised to take is Ibuprofen, which doesn’t help in the slightest. I don’t experience stiffness, but my hands get cold VERY easily, and I’m talking cold to an uncomfortable level. When I try to do anything considered “laborious” my hands swell up and get red. Also, when I stand up my toes get bright red and warm, as far as I can tell they swell as well. I’m tired consistently, especially when I am experiencing more pain. I’m just not sure what to do, I’ve been told that I don’t have RA, but my pain levels are only increasing, and it seems nothing I have tried has helped. I have a referral in for an mri, (finally,) and my only hope at this point is that it comes back with something helpful. I just feel frustrated and misunderstood. I feel like doctors don’t take me seriously if I talk about pain in anything other than my hands.

    Does anyone have any second opinions? I feel like I don’t have anyone to talk to or give me advice about this.
    Thanks for reading my wall of text, I appreciate the time people spend to help others on this site.

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  • By Emmu

    Forgot to mention that I have been previously diagnosed with Tietze’s disease due to having inflammation in almost all of my upper body (chest, around the neck, shoulders, upper arms, pretty much everything minus my hands) for 3 years now. Generally it is explained (woefully) as costochondritis, but I think that experiencing it for so long indicates that there is something else going on.

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  • By Erin Rush Moderator

    Hi Emmu! Thank you for reaching out and I am so sorry you are going through this! The road to achieving a correct diagnosis can be a long and arduous one, I know. You mentioned that you had some blood work done and had a slightly elevated Ana score. Did they do any other blood tests at the time? Because an RA diagnosis is usually made after utilizing a few testing criteria, including specific blood tests. You can read more about those tests here — https://rheumatoidarthritis.net/diagnosis/laboratory-testing/. Also, it is possible to have RA, even if the bloodwork shows a negative result for RA. It’s called Seronegative RA and you can read about it here — https://rheumatoidarthritis.net/living/seronegative-ra-blood-tests-dont-tell-entire-story/. I think you are wise to keep pushing for a definitive answer. Many chronic conditions are best managed by early treatment, so getting answers is the best thing you can do for your health and your future. While I cannot provide medical diagnoses, for your safety, I can tell you that some of our members deal with comorbidities (health conditions along with RA) or conditions that can mimic RA symptoms. If your doctor has not ruled these conditions out already, you may want to discuss this option with him. Some (but not all) of those conditions include Lupus, Fibromyalgia, Lyme disease. Diagnosing RA, especially at a young age, can be challenging, as you have already discovered! You mentioned your other diagnoses; are they being treated at this time? I really hope you are able to find out what is going on! Keep advocating for yourself. I know it can be tiring, but you are doing the right thing. Hang in there and please keep us posted on how you are doing, if you feel comfortable doing so. Best, Erin, RheumatoidArthritis.net Team Member.

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  • By Emmu

    Thank you for replying, it means a lot. At this time the only thing I have ever been told to “help” my other diagnosis is to exercise more to improve circulation. As you can imagine, this is very frustrating to be told. Especially since I know that no matter how much exercise I get or how much stretching I do it does not go away. And about other things that can be similar to ra, that has always been something I have thought about passively, but I find it hard to ask about for fear that I may not be taken seriously. It seems that every time I bring up something that the doctor hasn’t already said themselves I am shot down. This has been a fairly consistent them throughout every physician I have had, so at the moment I am wary of bringing up things like that.
    Thanks again
    -Em

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  • By Richard Faust Moderator

    Hi Emmu,

    First, let me echo, Erin’s sentiments that I am sorry to hear that you are having all these difficulties. Second, on top of the great information Erin provided, I just wanted to say to never forget that no on will look out for you like you. You are always entitled to a second opinion (in fact, a good doctor should have not problem with this). In this article from one of our contributors she describes being willing to do whatever it takes to get a problem with her ankle figured out: https://rheumatoidarthritis.net/living/first-second-20th-opinions/. Also this article from one of our other contributors offers some tips for finding excellent doctors: https://rheumatoidarthritis.net/living/finding-excellent-doctors/.

    Finally, know that you can always come here for information and support – sorry that it may be necessary, but certainly glad that you have sought out a place it is available. Please keep us posted on how you are doing. Best, Richard (RheumatoidArthritis.net Team)

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