Newly diagnosed, but fear it"s secondary

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  • #5473
    Dandylyondandylyon
    Participant

    Hi. I’m new here and I’m hoping some of you can give me some insight on this new diagnosis for me.   I have always had very cold hands and feet, but  my first episodic symptoms started about six years ago. They were very normal and typical.  I had  classic symptoms in my fingers , but only in the winter time when I got cold.  I thought it was probably Reynaud”s, and a discussion with my doctor confirmed it.  Fast forward six years, and things drastically changed. we are very active family.  We have three teenage boys and we are always on the go. My first severe symptoms started with pain in the arches of my feet  (Rt foot more severe).  My primary doctor  rreferred me to an orthopedic specialist. He diagnosed me with plantar neuritis and put me in a walking castfor six weeks. About three weeks into the walking started having severe color changes and pain in my feet.   I became almost bedridden. The only relief I can get it all was to be off my feet. Even standing in the shower cause my feet to turn purple. sometimes white and cold, sometimes red and hot, sometimes all of the above at the same time, or sometimes each foot doing something different. I realized my problem wasn’t orthopedic and went back to see my primary doctor. He agreed and decided it was vascular instead and referred me to a vascular cardiologist. He chose the cardiologist over and rheumatologist to rule out vasculitis because a rheumatologist is very hard to get in to in my area. From the beginning the cardiologist thought Reynaud’s disease. A CT scan showed severe diminished blood flow below my  ankles.  The cardiologists started treating me for Raynaud”s hoping to get it under control into relapse vasculitis hoping to avoid high-dose steroids. Long story short after changing meds three times I finally have it somewhat under control. I can live life much more normally although I’m still having flareups. In February I was on the ski slope and now all I can stand to do is walk for exercise. Most exercises make my feet flare. I got my primary doctor to refer me to a rheumatologist, but the appointment isn’t  until March. I woke up today with swollen fingers on one hand that are very stiff and my feet are flared up. Anyone out there have any similar experiences? I know I can’t get answers until I see a rheumatologist but I would appreciate any insight you have.

    #5489
    SarahSarah
    Moderator

    Hello dandylyon

    I’m sorry that you have to wait so long to get into a rheumatologist. I cannot say whether what you are describing is a connective tissue disease, only a doctor can do that, but I can make a comment about your post.

    The swelling is a big red flag that more than primary Raynaud’s is occurring and needs further investigation.  I have lupus and limited scleroderma. When I was first diagnosed with lupus the swelling was so bad in my fingers that I could not remove my wedding ring. The swelling did not go away until I started on medications prescribed by a rheumatologist.

    I hope that you can get into the rheumatologist sooner than March. Please keep posting and let us know how you’re doing.

    #5491
    Dandylyondandylyon
    Participant

    Thank you for your response.  In my gut I have always thought it was more than primary. What is happening now with my feet is very different than the typical reaction to cold that I have had in the past with my fingers. The cardiologist didn’t really want to refer me, so I got the  referral through my GP.  It’s crazy there is such a long wait. I got the referral in July. I am concerned about disease progression. Interesting what you said about your hands. My hands were swollen this morning.

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