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JustRachelle

2y ago

Misdiagnosed with Fibromyalgia: Seeking Answers

I THINK I WAS MISDIAGNOSED! let me explain.. please chime in to this conversation. šŸ’œ So in 2015 my blood work from my primary care doctor shows positive ANA and positive RNP antibodies. I was referred to a rheumatologist.. saw him in 2016 he said it was fibromyalgia and that he didnā€™t think I had lupus or rheumatoid arthritis.. (as if thatā€™s the only disease/condition there is) .. he redid bloodwork but NEVER the RNP antibodies.. thatā€™s weird because why wouldnā€™t he order that one again but ordered the others.. this time it shows a negative ana.. okay cool.. The diagnosis was fibromyalgia (and he states the symptoms Iā€™m having and the ones I wasnā€™t having) .. all of this time Iā€™ve been dealing with ā€œfibromyalgiaā€ ā€¦fast forward to last October I went to a new primary care doctor she did blood work .. ANA came back positive at this time I was in HELL I actually thought I was dying.. she redid the test 4 weeks later ANA was negative šŸ¤·šŸ½ā€ā™€ļø okay ā€¦ told me to see a rheumatologist and neurologist.. did both.. neurologist said it wasnā€™t nothing neurological told me to see rheumatologist.. saw the rheumatologist and she did blood work.. ANA negativeā€¦. BUT she did RNP antibody test and it was HIGH .. 3.4 and the normal range is 0.0-0.9 šŸ˜ÆšŸ™„ she said it was a ā€œfalse positiveā€ .. diagnosis = fibromyalgia Google research because if we donā€™t fight and advocate for ourselves who will.. everything I could find says that RNP antibodies with no other antibodies means Mixed Connective Tissue Disease also known as MCTD.. šŸ§šŸ§ I recently (last month in the mist of seeing this new doctor) I developed Raynuads Phenomenon šŸ’šŸ½ā€ā™€ļø which is apart of getting a MCTD diagnosis and I just found this outā€¦ and all the other symptoms Iā€™m having that are considered fibromyalgia are known in MCTD.. but in order to get the MCTD diagnosis you have to have high RNP levels šŸ˜³ which I have but Iā€™m being told itā€™s a false positive! Of course I donā€™t want a horrible diagnosis but I do want the CORRECT diagnosisā€¦ itā€™s almost like itā€™s being overlooked and Iā€™m not understanding why!! If you see this antibody in my blood and itā€™s BEEN in my blood why ignore it and call it a ā€œfalse positiveā€! I want to live a normal life I want to LIVE ā€¦ if it is MCTD and nobody is listening then what ???!!!

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