Hi Dr. Agar,
I’ve been on dialysis for 18 years now. I’ve been on daily nocturnal home hemo for the last nine years. I have a fistula in my left upper arm. I dialyse six nights a week, about 7-8 hours each night.
For the last few months, on the nights I don’t dialyse, my left arm becomes numb. The numbness has been worsening and I am having trouble sleeping on non-dialysis nights due to this. If I elevate the bed such that I am almost sitting, the numbness is better. Many times, I wake up with unbearable numbness. I then stand, walk about a little, shake my arm, massage it and the numbness gets better, only to return again in some time.
Surprisingly, on the nights I dialyse, there is no numbness.
I have shown this to a vascular surgeon and he checked the flow in the arm with some device that resembled an ultrasound machine and he said the flow was ok and would not worry about it if the flows during dialysis were fine. My nephrologist put me on carnitine but that has not helped - in fact, the symptoms have gradually become worse.
Any suggestions on what this could be? Thanks!