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.
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.
thanks
I hope you find answers.
thanks
Posted by Sonja44Sums it up.
Posted by Sonja44This meme cracks me up. I'm Fine.
Posted by PiperMckennaAlways cold + sick days = Mermaid. Sometimes living with peoples who like the AC isn't such a bad thing.
Posted by PiperMckennaI'm quite prone to bruising because of EDS....any tips on how to reduce the look of bruises? Ideally I'd like to prevent them. But it's too late for that today. haha
Posted by LadyAlyxandreaI didn't learn my lesson well enough in March when my incisions refused to heal because i was working the crazy shifts.
Posted by ponz111I have restless leg syndrome which is not uncommon but with me it is my whole body which has the complusion to move.
Posted by LadyAlyxandreaPost op day 3 update: There will be some TMI, which I will mark so you can skip if you don't want to get grossed out.
Posted by LadyAlyxandreaBehold!!!! My weightloss progress thus far!!!! And an update: Surgery in two days.
Posted by RavenCTTruth,,,,,
Posted by LadyAlyxandreaHow it feels going to the doctor
Posted by LutherzmeAnybody else have to do this once a week?
Posted by LadyAlyxandreaPsst hey kid.... You wanna see something cool? (I scared the shit out of my ortho p.a. as he walked by my office. It was freaking hysterical)
Posted by LadyAlyxandreaFor today's game of "whats that weird random pain" I broke my big toe.
Posted by LadyAlyxandreaSo I finally have the date for MEETING my new neurosurgeon.
Posted by sassygirl3869Medical Reasons For Using Cannabis
Posted by sassygirl3869Multiple Sclerosis Relief