Just diagnosed. Hoping supplementation helps.

Many on Reddit seem to not have improved and it has me nervous I’ll be one of them.

I’ve had symptoms for over a year now ranging from muscle tightness and spasms to difficulty walking to muscle fatigue to pins and needles and memory issues. A few others as well.

Journey so far- 1. MRIs of my back and neck done with no findings 2. Blood tests, no findings 3. Physical therapy, didn’t help 4. EMG of my leg, no findings 5. Referred to a neurologist who did more blood tests and found serum copper levels were 65 mcg/dL (70-170 normal). Ordered a follow up test. 6. 24-hour urine test results were <5 mcg/dL (15-60 normal range) and Ceruloplasmin was normal at 25 mg/dL.

They ordered a script for a copper supplement of 8mg per day over the first week, then 6, then 4, then 2 and 2.

Is it reasonable to expect this would address symptoms since ceruloplasmin was OK? Is there anything else I should be doing?

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UPDATE: Almost done with my 4 week supplementation and I do think it helped. Muscle twitches are still present but less often in fewer places and with lower magnitude. Muscle tightness later in the day is less pronounced. A few things that have almost entirely improved are the pins and needles and the odd sensation in my right leg that was causing walking issues. Memory and energy levels seem to be better too.

I haven’t been retested so I have no idea what my current levels are but I do feel like I’m making progress.

Still pretty nervous all the improvement will reverse but I think the fact that it seems to have helped at all means I’m on the right track.

In addition to the copper, I took a digestive enzyme and vitamin A to maximize odds of absorption and ceruloplasmin production (this was my decision, the doc didn’t mention either of these). I learned from this that I have Chrohn’s in my family and (sorry, TMI) I can definitely see something like that being my issue with the way and frequency #2s come out. The enzyme seemed to firm everything up. I may still ask to see the gastro since that was going to be my next step if things didn’t improve.

My urine levels were low (“<5 mcg/dL” was the low reading on the test, it couldn’t report my actual levels because they were too low) but my serum copper was only marginally low and my ceruloplasmin was in the low normal range. All that said, if low copper was my issue with those readings, someone with lower levels would really have to be going through it.

Hope this helps someone else out there!