Has anyone had IVIG Infusions for Neuropathy?

Scott22 @scott22

Thanks for the info kgitti. I am on Medicare with an Advantage Plan. Because I don’t live in Mass I don’t know if going to Mass would be considered as out of network. I will have to check first. Thanks again for your helpful comment. Scott22

Scott22 @scott22 to Autoimmune Support Group

CIDP

This autoimmune disease has many different causes. If you have been diagnosed with this disease and your Neurologist can figure out what’s causing your symptoms, I think the Neurologist can recommend some sort of treatment. What’s frustrating is the treatment can work for one person but not another person. It’s seems that it’s a spin of the dice to find the right combination of treatments that work on every individual. The expense seems to be very high to the individual when a treatment is recommended but doesn’t work. In my case where I have very high inflammation and my Neurologist doesn’t know why it’s going to be roll the dice, try this, try that and see if there is any benefit. While this hit and miss games is being played, the damage to the nerves continues. I believe I have always been known as a very positive person. I think this disease will challenge me like nothing I have experienced in my life time. These are just my thoughts. But I have read so many posts now I can feel people’s frustrations in their post. I continue to pray for all of us that we find a solution soon because the nerve damage can’t be reversed and the damage continues. Scott22

Scott22 @scott22
To Autoimmune Support Group

One more thought. We all need to be people that our immune group folks can lean on. Many times family members who don’t have this disease just don’t understand what we are feeling inside. I have become distant only because I have to think about this all the time. Scott don’t sit to long, Scott get up and walk, Scott think about every step you take, Scott don’t complain to your family or friends. Scott you don’t want to be the downer of the group when out and about with everyone is having fun and you have to smile all the time. When I am asked how are you today my response is the same, I am doing well how are you. I appreciate the fact I can vent within this group because you all understand feeling the same frustration. So as I tell everyone, don’t have a good day, Make it a good day, it’s a choice you get to make. Scott22

I am too scared to complain. Let me explain what I mean. In 2002 I got bacterial spinal mengitis. I lost my short term memory and did not remember my coworkers. I had to relearn how to write, read and drive. In 2010 I had three left hip replacements and an actebulum fracture. It took me a year and a half to be able to walk again. I can't walk as fast as others or my hip will give out with extreme pain. I lost a lot of friends. Now I have this that no one can figure out. All my inflammatory markers are high but I test negative for everything. Current diagnosis small fiber neuropathy, cardiac autonomic neuropathy and severe axonal senorimotor polyneuropathy. Here is my question after all this two doctors brought up CIDP. All my autoimmune markers are high but test negative for everything.
If I have CIDP do I have everything else or just CIDP?

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

Varies wherever you get them. I also have to have a liter of fluids to fight side effects before and after my infusions.

I had it about 5 years ago and it had no effect on my neuropathy.

I am now into my third month of IvIg infusions. My immunologist, on the basis of finding a SAMD9L mutation (variant of uncertain significance, but likely to be disruptive of function), recommended that I get an IvIg dosage that is "immuno-regulatory" because testing revealed I am both immunodeficient (don't raise enough antibodies to vaccines) and potentially autoimmune due to symptoms of intense burning feet, ankles and calves, and very evident inflammation (red, hot & swollen feet & ankles). So far, I am not noticing any reduction in symptoms, but I recognize that it will be months before I might begin to notice any change. In the meantime, my pain doctors won't prescribe even the lowest dose of opioid because of other meds I'm on, so I have very fragmented sleep, which only makes the pain worse. In addition to my SAMD9L mutation, I also have pathogenic mutations in my SDHB and FBXL4 gene. All three of these genes affect the function of mitochondria (the energy producing organelles found in all cells), and I have been diagnosed with mitochondrial dysfunction. Does anyone in the group have mutations in genes encoding mitochondrial proteins or been diagnosed with mitochondrial dysfunction? Has anyone been diagnosed with erythromelalgia?

@scott22
You are so right that most do not understand our nerve damage and invisible suffering. I have experienced that same from people. Most do not care to hear that we are really not okay. Close family and friends may show some care but they really can’t comprehend what we are dealing with every moment of every day. I am normally a very positive, optimistic and energetic person but my neurological decline is the toughest fight of my life. I am 54 years old and a single parent of a 14 year son. I’m his sole provider and I have no extended family or support system. I am no longer able to work and lost my job in October and health coverage is now extremely expensive under COBRA. My faith and hope is all I can hang onto at this point. I am concerned about getting properly diagnosed and treated for a better quality of life while the nerve damage continues. I didn’t feel like living after losing my job last fall but I am now just trying to find something I can do everyday and praying for strength to get me through each day.

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.