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deeyanlis10

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About deeyanlis10

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    Jacksonville, Florida
  1. Aphasia In Scleroderma

    Hello , I am new to this site. I was diagnosed with Scleroderma 9 months ago, March of 2015. I had many autoimmune symptoms prior to March. On Oct of 2014 I started loosing my voice. My doctors thought it was laryngitis, despite my not having any positives for infection of any type I was treated with multiple antibiotic prescriptions. Went through speech Therapy but nothing worked. No one could see anything wrong with my cords. Needless to say after countless visits to the doctor and E.N.T's I was referred to an ENT specialist in Botox injections. The result was that Botox was not a good option for me. Unfortunately I was not a good candidate for botox and was told it could cause me more harm than good. I was then diagnosed with Paradoxical Vocal Cord Motion with risk of anaphylaxis. As of this date none of the doctors think that Scleroderma is associated wtih my voice loss however I believe it does. I should also say that none of the doctors have ever had any patients with Scleroderma nor were familiar with Scleroderma except for the Rheumatologist that diagnosed me. Unfortunately my health insurance was cancelled so I could no longer see any of my doctors for further evaluations or to see if they have learned anything new from my medical chart. I strongly believe that with rare diseases, who can say with 100% certainty that voice loss is not associated with Scleroderma. I think as Sclero patients we have to make these doctors aware of what is ailing us. At one point, I felt and was made to feel as if I was complaining too much to my doctors. When I started feel like my symptoms were neglected I realized it was my job as a patient to push the issue. It dawned on me that if I don't say what is wrong doctors will not be able to help. I hope you all have a blessed day. off topic... I intend on finding a way to bring more awareness to scleroderma in my area. If you are from my area feel free to PM me. I am looking for a support group or to start one. Feeling alone in this area.
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