It is a long haul! Multiple diagnoses, misdiagnoses, and everything in between. You are left fight for your life so you do it. I’m a nurse and am still fighting for appropriate timely care in my area. I was first diagnosed with MS at age 28 after that all of my autonomic nervous system dysfunction got thrown in that bag even other stuff that could not make sense. More often than not health care wants things tidy, they don’t want to go searching if they don’t need too. Now I’ve had weird stuff as soon as I hear “Rare” I know it’s me they are talking about. As one of my favorite Drs says “Elizabeth you just never vanilla.” Now seriously I want to be vanilla, plain vanilla.
I’m 61 yrs old and tired of getting a new diagnosis every time I turn around. Do any of you have arrhythmias from the cardiac side? I use to be just really bradycardia (slow) ❤️Rate then it got fast now it’s crazy and I’m on meds that don’t effect the blood pressure.
Now I don’t know why I am growing nerve sheath tumors along my spine. No idea it’s not cancer but the two found so far are inoperable slow growing off the spine. Like a little farm, you grow one you grow more. Like I said rare suupposivily. Something I am just finding out about.