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Two Years to a Diagnosis

Hello, I am new to this site and RA. Two years ago, I was an active assistant professor of nursing. As a requirement of my employment, I received an annual influenza vaccine. I experienced a life-threatening reaction to the vaccine, with an acute arthritic response. I was hospitalized and tested for every condition possible: MS (Lumbar Puncture), Lupus, Guillian Barre, RA, Myasthenia Gravis, etc…

All of the tests came back normal but I continued to suffer.

I was sent home with a recommendation to keep moving and seek counseling (When no diagnosis is made, you can be deemed crazy). I could not believe that I was expected to live with the debilitating symptoms. I could barely walk, had facial rashes, joint swelling and pain and intense fatigue. I settled with a neurologist who felt I had neuropathy but no medication helped. My symptoms were episodic but after each episode I was left feeling worse than ever. This went on for the entire two year period. I had to give up my career, my hobbies and learned to adapt with canes, assistive devices and rest.

One month ago, I began seeing changes in my wrists and ankles. I was developing intense pain as well as hard knots. I asked my neurologist if she would refer me to Rheumatology and was told, “We checked you for this in the past”. I persisted and told the physician that I had to get help. I had heard of individuals who were seronegative. I walked into the Rheumatologist’s office in bad shape. I was placed on Prednisone and followed up with him in two weeks. On the second visit, I was given the news that I had RA. That was October 2nd of 2018.

Today, I continue on the Prednisone until I have completed 5 weeks of therapy. I will then begin Methotrexate.

I am nervous and concerned about my future.

Having worked as a nurse for over twenty years, I recall caring for individuals who were scared about their diagnoses and treatment. I understand more than ever how frightening it can be.

My prayer is that I can connect with people who are in the same boat. Those who have been where I am and offer support and hope.

Blessings,

Rachael

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Richard Faust moderator
    11 months ago

    Hi Rachael. Sorry you had such a difficult diagnostic process. Wish I could say this is rare, but up to 30 percent of RA patients are seronegative and often experience problems getting a diagnosis. Your concerns about moving forward and treatment are understandable and it is good that you have come to a place you can get information and support. You mentioned you will be starting methotrexate, so thought you might be interested in this article from our editorial team giving an overview of the drug: https://rheumatoidarthritis.net/treatment/methotrexate/. Also thought you might be interested in this article from one of our contributors on questions for the doctor: https://rheumatoidarthritis.net/living/questions-for-the-doctor/. Please know that you are always welcome here and that people in this community understand. Best, Richard (RheumatoidArthritis.net Team)

  • Daniel Malito moderator
    11 months ago

    @rachael57 I’m sorry to hear that, and it can be scary when you don’t know what’s coming. If you were a nursing professor though, I’m sure youknow how much humans can endure and normalize, and the same thing will happen for you. No matter what happens you will find a routine that works for you most of the time, and when it doesn’t, you’ll have a bad day. It’s the way it works with RA. Good luck, and keep on keepin’ on, DPM

  • Rachael57 author
    11 months ago

    Thank you Daniel! I think I am in disbelief right now. I have a strong background in health care and know about nodules. I think I was hoping that someone would provide a more benign explanation. I truly appreciate your comments and advice.

  • Rachael57 author
    11 months ago

    Thank you to Daniel and Richard for such wonderful support. The articles have been helpful and answer most of my questions. I am beginning to realize that life will go on with some modifications.

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