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Has anyone had IVIG Infusions for Neuropathy?
Neuropathy | Last Active: Oct 3 7:57am | Replies (491)Comment receiving replies
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
Replies to "Scott22 @Scott22 To Autoimmune Support Group One more thought. We all need to be people that..."
@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.
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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?