I have been diagnosed with a few rare diseases, some right some wrong. I've seen over 30 doctors in the last 18 years, apparently I'm a medical mystery. The first one I got was Trigeminal Neuralgia which lasted 6 months, thankfully I have had no major attacks from it since. The mystery begins 6 months after that attack ended. I was in the best shape of my life but while working out I started getting muscle soreness when I shouldn't have been. After stopping completely the workouts because of its growing intensity it did not stop until I could no longer dress myself or walk without help within 30 days of it beginning. massive doses of steroids I was back to new. As I came off the drugs it came back but not as bad as before. It settled into constant pain and muscle twitching. The mayo clinic found I had Hep C so they blamed it on the Hep C until a few years ago when they finally cured me. Now my neurologist thinks I have polycythemia, a rare blood cancer, so I have an appt with the oncology hematologist on Wednesday to see if I really have it. I've been told many times I might have a rare disease only to go to the specialists tests and find out I do not, so I'm skeptical still. Even if true it's a pretty treatable disease usually. This one did come differently then the others so it has a better chance of being true then some others did though. Sorry it's such a long post, it's a long story so I hesitated on sharing it.
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I hope you get an accurate diagnosis soon. It is scary when the blood work points to potential cancers. I get tested for multiple myeloma once a year. So far all is stable. It is still scary. I hope it is treatable.
Katrina51
Level 3
June 16, 2018
2
thanks
I hope you find answers.
CarolinaGirl60
Level 8
June 16, 2018
2
thanks
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