- CASE FILE
39yof, had IVIG, plasmapheresis, meds, and nothing has helped. I don't know where to turn for help. Been UMMS, Boston. Mayo, NOW WHAT
ABOUT THIS CASE FILE
I was 34 years old when my symptoms started. I was and still currently a Paramedic. I was fit and worked out all the time. Suddenly after training during physical activity I became severely short of breath and cyanotic in my face and I felt horrible. I started to monitor my SAo2 and my sats would drop into the 70's during physical activity. With in the past 5 years I have seen numerous specialist; cardiologist, pulmonologist, neurologist from here in Baltimore to Boston and I recently got back from the Mayo clinic. My first diagnosis was pre load heart failure and about a year and half later I was diagnosed with small fiber polyneuropathy. I had to get a cardiac catheterization while riding a bicycle for the first diagnosis and I had skin biopsies for the second diagnosis. I was told my peripheral blood vessels do not pump enough blood to my heart therefore I become SOB. I was put on Mestinon, Flurinef, and even did 6 months of IVIG which did nothing but raise my BP. I then had a central line placed, put on Celcept, and did plasmapheresis for 28 treatments. My port got infected and I developed a blood clot and was put on Eliquis for 10 months. During that time of different tx's, meds, and a lifestyle change, I still have not improved and I continue to become cyanotic and SOB. It has gotten worse, whereas before I would only get that way during intense activity and now I get SOB and my lips turn cyanotic from carrying groceries up the stairs. I was at the Mayo clinic just a few months ago and they did numerous autonomic testing, cardiac, respiratory testing and they cathed me again. After a week of testing I was told I do not and never did have those original diagnoses. I was so lost and confused. How can one get diagnosed, go through invasive tx's and then be told you do not have that. My question was well what is wrong with me? Why can't I breath and why do I turn blue? They had no answers, my heart and lungs were good. Very frustrating. I went back to the Mayo clinic and saw vascular. He believed I may have acrocyanosis but he said it still doesn't explain why I am SOB. I do not know were to turn, who to talk to, or what to even think anymore. I am a mother of 2 children, 9 and 14 and keep me busy. I work 2 jobs, go to every baseball, basketball, and school recital. My life is harder now that I can't breath. I try to work out as much as possible but when you can't breath and turning blue all the time it is hard. Everday activites gets harder and harder. Even talking ( I am a fast talker) I turn blue in my lips. Please if you can help, please reach out to me.