Hi sliddy47, I’m really sorry to hear that😔
I hope you can find a smart, empathetic doctor asap.
I hope you don’t mind me asking, however I was wondering how you’re getting along in the mean time?
Do you have some support or family that can help out?
Please only reply to what you feel comfortable discussing 🙂🌺
I visited a neurologist the other day whom kept repeating i should be taking some heavy pain drugs and/or mind altering neuro meds (the ones used for epilepsy/depression/anxiety/bipolar - sounds like a fishing expedition and I’m not biting), despite brain changes on mri showing structural change (nothing a pain med or psychotropic will grow back), so I stood firm and said a big fat “no” several times over…all with him knowing I live alone, can’t afford even more dizziness (which many pain and psychotropic meds induce) due to the usual 4-7 falls a week (yes, a week), and diaphragm palsy (which would result in chronic hypoventilation during the day and possibly inability of my ventilator being unable to keep me alive during the night if I’m not responsive when the critical alarm sounds [power failure, or kinked hose, for instance - two things needing immediate response to prevent acute deoxygenation and subsequent hypoxaemia leading to tissue and brain hypoxia…once it gets to a certain level I’m unable to respond to save my own life, and meds that alter any part of brain or body activity involved with the act of breathing will cause significant harm or death]). The neurologist knows I survive on a ventilator when I get too fatigued to breathe independently as well as keeping me alive overnight, but is still very happy to pressure me to take meds risking breathing ability. All this does is unfortunately lead me to immediately decide that their medical degree is wasted on them, and my time is worth more than to entertain their draining company a moment longer.
The follow up he booked was in 6 months. If I followed his ‘advice’ (ahem: one way ticket) it’s unlikely I’d be in a fit state to return at that time🙄
I have no one related to me that relies on me, so I’m not so concerned anymore about what this disease does, due to the complete lack of appropriate contemporary medical care here in this public health system. However, I can definitely relate to how awful it feels to be needing help while the clock keeps ticking, and the some of the medical fraternity is blindly correlating cancer to symptoms when the two are independent of each other in some MGUS cases, and using this as justification to dismiss and deny persons with MGUS sufficient investigations into symptomatology.
I really do hope you find a good medic, and they undertake some specific testing for you 🙂🌺

Hi @sliddy47 I just wanted to follow up with you to see if you’ve been able to find a new doctor. It’s so frustrating to not be taken seriously when you haven’t been feeling well and know ‘something’s up’. Have your symptoms worsened or have you seen any improvement?