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Has anyone had IVIG Infusions for Neuropathy?
Neuropathy | Last Active: 4 days ago | Replies (410)Comment receiving replies
Scott22 @scott22
In reply to artemis1886
I retired 10+ years ago at 60. I retire January 2014, May 12, 2024 I had a right total hip replacement, replacement was fine but when I started outplacement PT on my second visit the PT Supervisor who was overworked damaged the muscles that hold the replacement together. I have suffered ever because all the tears scared over. My orthopedic surgeon who performed the procedure is a very good friend. He was really upset because there was nothing he could do to fix the damage. A year later June 30, 2015 I had 3 levels of ACDF C4-C6 performed. Again the orthopedic surgeon and neurosurgeon were close friends. So far all the surgeries were performed by friend and all of us were connected as we all served in the Army. May 17, 2022 I had Lumbar Decompression L2-L3, L4-L5 Lumbar Laminectomy, Facetectomy and Foraminotomy Vertebral Segment. My first EMG test was done in April 2022 results were mild Demyelinating and Axonal Sensorimotor Polyneuropathy. One year later I had a procedure Posterior MIS TLIF L2-L3 One Level Fusion. Oct 5, 2023 I had my second EMG test and was diagnosed with Sever Demyelinating and Axonal Sensorimotor Polyneuropathy. The Neurologist who performed the EMG test became my Neurologist and said to me right after the test he was very concerned with the results. The first available appointment to receive a consultation with him was January 15,2024. He order a complete neuropathy bloodwork panel and had all of them done at the hospital. The complete results weren’t available until April 2024 but as the results came in I was made aware. The only result that was positive was the SED (Erythrocyte Sedimentation Rate)
Normal rate is 0-15 mm/an and result was 25 High. April 2024 my Neurologist told me my condition was Idiopathic, cause unknown. I am not even going to list the other 3 surgeries land 2 procedures I had. My Golden years are not very Golden. Anyway I completely understand what you have explained because I has earned the right to understand. I also didn’t tell many people about the challenges I had because I always believed that 80% of the people don’t care, 10% are happy your having issues and only 10% care and those people are family and best of friends. I never told my 2 daughters and 3 grandchildren about my current challenges. But my wife told them 6 months ago and my grandchildren asked me directly so I could explain to them. We are very close and we text each other often and they share with me things they don’t even tell their parents. Because you will never know who I am, I am not concerned about breaking the rules that we all agreed to, what ever we talk or text about is confidential with each of them. The 3 of them think they only have that special relationship with me. So now that I told you all about me because you have earned the right experiencing many of the same challenges. So are you the 80%, 10% or the 10% because now we are friends. Scott22
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It’s interesting. I have had a cervical fusion adcf did not take due to bone disease injured during a fall due to seizures. The doctors believe it happens when my blood pressure drops. My lower back L4-S1 they did a laminatey on. I have avascular necrosis in my knees tibia/fibia. I also have it in my lower back. Dice the doctor should have never done the ACDF I was told it would be fixed when it loosens. I have learned the same thing about friends.. If I say anything to my mother the whole family finds out. So much for confidentiality. My husband knows but he has not read up on anything that’s wrong he prefers to remain ignorant. When I wake up in the morning and can’t bend my hands because they are so stiff and hurt. They are also very hot. He makes me feel like it’s an inconvenience for him to rub my hands and loosen them up. I have lost the muscle around my hips so the metal sticks out and it grosses him out. Talking to him is difficult. His mother constantly complained and over dosed on pain meds. What’s frustrating is I scored 13 out of 14 is positive for Rheumatoid Arthritis. My grandmother, mother nephew was born with juvenile rheumatoid arthritis and my Aunt just tested positive. For some reason my body is weird. My normal temperature is 97.8. The highest it got with bacterial spinal meningitis was 99. I was unconscious and hallucinating. The doctors could never understand why my fever never got higher. The doctors told my husband if he would have waited another hour I would have been dead. He had taken me to the emergency room two hours earlier to be to it was a migraine but with a migraine you don’t stay in the bathroom throwing up forever. They had pumped me full of Demerol and sent me home. The second time I don’t remember except I remember the spinal tap hurting like the dickens..
what percentage am I. I understand that what we go through is not easy on a daily basis. Some days I lock myself up and just cry where no one can see me. It’s very frustrating and lonely because people don’t understand and don’t want to hear it. You are very lucky to have the relationship with your family over what you say stays between you. That no one blabbers it through the family.