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Waiting for answers and scared

  • By dmcrose

    Hello.
    I am new to the forum. I am not hundred percent sure that I have RA, but my doctors think that it is a strong possibility. We are waiting on blood test results, but we know that, since June of last year, my knee, hip, and one ankle have deteriorated down to bone on bone. I never had a problem with them prior to June. The ortho told me that I need a new knee and I will need a new hip eventually. He is the one who suggested RA because multiple joints are involved and I am a bit young to have this much joint damage. Until these latest scans, I had thought that my problems since last June were due to lupus, which I have probably had since my early 20s. I was diagnosed with lupus, and then I had doctors who doubted the diagnosis until I got with my current doctor whose wife has lupus. He immediately recognized that I had widespread inflammation, and he put me on plaquenil and methotrexate. I also get Kenalog shots every few weeks because my body just can’t throw off the inflammation.

    Now my hands are involved. I have resorted to using voice to text software because they are very painful and I am starting to get red knuckles. This is very depressing for me, because I have been a musician since I was very young, and I have been a wildlife and exotics rehabber for 20 years, which requires fine motor control. I’m very scared about losing my hands. My doctor tried to assure me on Friday that I will not lose much more ground because there are very good treatments these days, but I am still worried just because of the damage that has already occurred in my lower extremities.

    At this point, I almost hope that the blood test is positive so that we know exactly how to proceed. I am here because, although my friends know that I have been sick, it is hard for me to talk about it with them. I don’t want to burden them.

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  • By Erin Rush Moderator

    I am so glad you found us and took the time to comment, dmcrose! I know it’s scary to face health issues and not have any definitive answers. Please know you are welcome here, whatever your test results may show. IF you do have RA, your doctor is correct in saying that there are a lot of treatment options that can help you.

    Here is a piece by one of our contributors that you may find reassuring — https://rheumatoidarthritis.net/living/back-to-the-future/.

    Please know that you are not alone on this journey. We have a diverse community that can truly empathize with what you are going through. It’s ok and normal to be scared of the “what ifs” and unknowns, but just remind yourself that you have made it this far in this life. You are capable of much more than you may think.

    Keep us posted on those results, if you feel comfortable doing so. And you are welcome here anytime, even if you just need to vent. We’re “open” 24/7.

    Have a good night. Best, Erin, RheumatoidArthritis.net Team Member.

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  • By dmcrose

    Hi Erin,
    Thanks so much for the kind words, and sorry that it has taken me so long to respond. I didn’t get any solid answers until yesterday when I saw my new Rheumatologist, who didn’t confirm RA per se, but she did tell me that it is probable. At this point, I am seronegative with inflammatory polyarthropathy in addition to lupus, spinal stenosis (whole spine from the neck down), neuropathy, and now there is something wrong with my eyes. She took a lot of blood, gave me a massive dose of kenalog, and sent me home with injectable methotrexate plus a prednisone dose pack. The oral methotrexate has been making me too sick to lift my head on the weekends, and since it isn’t doing as much as we would like to reduce the inflammation, she will switch me to a biologic or infusion once she makes sure that I don’t have any hidden infections. She also wants me on tylenol 3, but I have concerns about that. I will post those concerns in the med forum.

    I was so nervous about the visit that my bp was high by the time I got into the room. As many ana negative lupus sufferers and ra neg RA sufferers know, finding a doctor who looks at the big picture rather than focusing only on blood work can be hard, and if you don’t luck into finding such a doctor, it an be soul crushing to know that you are sick, but be told that you aren’t. I have lucked into two very smart doctors who look at the big picture, and who stay current with new research. The Rheumy is a researcher in the med center.

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