Scared and worried: Hi I'm new to this forum this... - LUPUS UK

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Scared and worried

rxtcjw1 profile image
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Hi I'm new to this forum this is my first post. I'm 51 years old and have been suffering with fatigue daily headaches joint pain etc. for years now. It probably started when I was 17. I had 3 seizures but did not tell my parents too scared to investigate, luckily I have not had anymore. I have had livedo reticularis as long as I can remember. My doctor has told me many times he thinks I have an autoimmune disease. They have tested me it always comes back normal, now waiting for test results from Friday. Went in because of atrophy in hands, they said when results are in they will refer me to a rheumatologist. I have been reading your post since December 2016. Has anyone ever had wasting (atrophy)? I live in the U.S. I began gluten free diet about 3 years ago that helped a lot with digestion and inflammation. Eating any foods with preservatives also causes me problems. My doctor had me on amitriptyline and anti inflammatory for many many years. I became frustrated they were only treating symptoms and masking what was causing it so I stopped taking them. Really need a good rheumatologist! Thanks for being here!! Christy

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Penguintaz profile image
Penguintaz

Hi there :)

I'm not 100 percent sure how the health system works in the US but do keep us updated on what your results come back with. It can be very scary but this forum is here to help! Thanks to my treatment I now only rarely suffer with joint stiffness/ pain but it is most noticeable in hands, I hope that they can get you the right treatment plan and your symptoms go. I'm glad the gluten free works for you, it can be dangerous to cut gluten from your diet if you are not a celiac or a person with intolerance to gluten but seems to have worked for you so I am glad :)

rxtcjw1 profile image
rxtcjw1 in reply to Penguintaz

Thanks, Penguintaz

I will keep you updated, hopefully I will hear something soon.

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