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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)Comment receiving replies
Hi Colleen & John,
Thank you for sharing this information. My name is Patti and I'm at work so i'm hoping i can finished typing this because I get interrupted frequently. I was just diagnosed with Peripheral Neuropathy. I've been having pain in my left calf for a couple years and going to PT for my back to help with herniated disc & arthritis. I started having more burning pain on my upper right thigh and noticed having some muscle wasting and weakness on my arms. I am not diabetic but do have Polycystic Liver and Kidney disease. I had a liver resection surgery in 2000 and a living kidney transplant in 2006. I finally went to a neurosurgeon and had 4 MRI's on my Brain, Cervical, Thoracic and Lumber spine which then was diagnosed. I do have a small sheath tumor around the L5 nerve root but it's so small that the neurosurgeron does not want ti perform any surgery at this time.. The plan is to have another MRI on the Lumbar and brain in 1 year. The neurosurgeron has referred me to a neurology consult.
I would appreciate any information . Would love to increase my knowledge and hoping I can slow down this progression. Thank you so much!
Pk
Replies to "Hi Colleen & John, Thank you for sharing this information. My name is Patti and I'm..."
I have liver disease and kidney disease from a medication I was given. I have 3 types of Neuropathy after being in a coma for a month when my liver shut down. As a result I have and others with Peripheral Neuropathy and more. I had a brain MRI last week and I was told I have damage to the globus pallidus which will only get worse even with a transplant. I have lost most of my balance as a result. I have been told even with a transplant this can get worse. Short detail I am numb from my neck down but I have Peripheral Neuropathy and 2 other types. I can feel my muscles and bones however. I have muscle wasting as a result of liver disease as well. The pain in my legs starts at the center of the bottom of my foot and goes up my legs. I am woke up and must stand up to help. I take Gabapentin and Tegretol for the shaking I have. It is like the symptoms Parkinson’s patients suffer from so I begin therapy with the Parkinson’s patients soon. I see a Neurologist, Movement disorder Neurologist etc. I didn’t have the muscle and nerve biopsy because my health is not good enough. Do you have any brain damage as a result as well? My ammonia levels are high despite Lactulose and Xifican so this is one major cause of the brain damage. I could start another treatment with Neomycin and another antibiotic but my kidneys would get damaged. Kidney damage or brain damage I pick kidney damage.
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My Neurosurgeon ordered MRIs of Lumbar and Myelogram for Lumbar as well as CT scan of Thoracic spine. Various problems visible with degenerative disc disease, calcification, spurs, arthritis, etc. He sent me to a Neurologist who diagnosed me with mild Neuropathy on both side of buttocks down to the feet. Shortly after, the foot pain, numbness, burning, cold sensations, over sensitive nerve pain all appeared withing weeks after the diagnosis.