Copper deficency diagnosis.
March 15, 2017 at 5:40 pm
On the evening of Sept.12 2016 upon standing from kneeling in prayer I realized my left great toe was numb, not completely but the sensation was muted.. For lack of a better term. I thought it was odd, made mention of it to my husband, and thought no more on it. That is until the following morning when I woke up realized it was still numb. About an hour later I realized my right ear canal and right shoulder blade area was numb. I didn’t know what to make of it. I didnt want to make much of nothing but decided to go ahead and get checked out. I don’t think the Dr. believed what I was telling him because he kept arguing that I wasnt really numb if I had sensation, and I didnt know how else to describe it. He decided to check my thyroid levels and sent me on my way. I later made a follow up appt with my PCP. By this time the “numbness” was in both feet and was slowly progressing up my calves. He suspected MS and ordered more blood tests and sent me for an MRI Im not really sure what all was included in the blood test but it came back low Vit D. and the MRI was normal. So he started me on supplements. By Dec my symptoms were not getting better. It seems like everyday a new symptom would occur. I now have numbness on my hands, scalp, forehead, neck, back and bottom.
I decided to make another appt. with my PCP. Upon this visit it was clear my Dr. was at a loss, although he still made mention of podsible MS and referred me to a Neurologist. I dont have the neurologists’ notes but I’m pretty sure the only remarkable thing was the vibrations test upon examination. Which made me feel better because up till now I could’ve been making the whole thing up as far as anyone else is concerned. He told me low Vit would not cause my symptoms, and We discussed possible toxin exposure he ordered another blood test to check for antibodies and also a 24 hour urine test. The results came back low copper, and I was started on 3mg daily of Copper daily. The symptoms are still slowly progressing, I am now experiencing painful muscle spasms, zaps, and twitches, continued and worsening numbness, as well as fatigue. I feel i have slowed down considerably, though I am not having any noticible dificulty walking. I called the neurologist office this week to see if I could pick up my orders early so the results would be back in time for my follow up appt. in April. and made mention that I wasnt feeling any better. He prescribed that I now start 3mg twice a dayb instead of once.
Has anyone here been tested for Copper def. and if so what were the results. I am curious if there is something more going on here.
March 15, 2017 at 9:13 pm
While your symptoms could be caused by a number of things, your neurologist should rule out either GBS or CIDP as a precaution.
I went through a similar progression. Thyroid testing, ruled out. Then my vitamin B-12 levels were low, wasted 3 weeks rebuilding their levels while I got progressively worse.
If I remember correctly, my journey with CIDP started with sharp pains in my toes and often foot pain. It came and went at first. Then I started with sharp pains in my pointer fingers in both hands that alternated. Finally I started experiencing numbness in my hands and feet, ultimately ending up with the glove and sock feeling. Fatigue and loss of motor control followed.
So push for testing to rule out more serious issues. Being a CIDP sufferer, an electrical stimulus test and a lumbar puncture are the 2 ways to determine if you have it. I can’t speak to any other ailments. Maybe someone with GBS can relate their experiences.
March 16, 2017 at 11:05 am
I have axonal GBS and the diagnoses was from a lumbar puncture to check for the presence of proteins and a EMG.
March 16, 2017 at 3:12 pm
Thank you so much for responding.
Thankfully my symptoms are not near as bad as some of you have experienced. I know it could be alot worse.
I am going to continue to take the Copper twice a day like he suggested. I have two weeks before I need to retake the test for Copper levels in order to have the results back by my follow up middle of April. Hopefully no more tests will be needed, but if I am still having symptoms I will push for further testing, and at least will have possibly ruled CD out as the culprit.
I forgot to mention, the neurologist did do the EMG on me and it was normal.
His diagnosis “Copper Defiency Neuropathy” which I’m told is also very rare in developed countries,CD that is, and is only more common in individuals who have undergone Gastric Bypass surgery, which is not the case with me. My PCP had never had a case in his career, and it was only the second case my neurologist had seen since he had been practicing medicine.
I saw an earlier post (the details are foggy now) regarding a patient who had a positive diagnoses for CIDP and also tested CD. And her doctor requested her permission to give her information to a Dr. that was conducting research regarding possible connections of the the two. I think she said she knew of at least one other patient under her doctors care that were being studied.
You may still be able to find it if you put copper in the search field.
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