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Nerve biopsy test: Is it done by a neurologist or rheumatologist?
Neuropathy | Last Active: Dec 10, 2021 | Replies (222)Comment receiving replies
@sunnyflower I know what you mean about the "always smiling and positive" demeanor causing others to not think what you have is as severe as it is. When my wife (who has bad neuropathy), talks to anyone, including our families, she seems very strong and forceful, outgoing and very good natured. She is somewhat stoic and even if she is suffering badly she still can manage to mostly seem normal to others. I don't think all of them realize how bad it is. I have to tell them and describe what she goes through. Then they say, "Wow, that's bad!" and I say "Yeah". Otherwise they just don't quite get it, like when she was not able to travel to see them (before covid). I don't think they really ever believed she was in that rough of shape. Best, Hank
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@jesfactsmon @jimhd Hank and John, For me, I get feeling alienated feeling from my family, when they don't ask about how I am doing, or when they say things that show me that they have not been really listening very well. Being that I cannot control my emotions, I do tell them, however. It pains some to them to know, and some just don't get it. I think at some level, if a person has never felt extreme, relentless pain, they just can't comprehend. I am almost glad when they don't understand, because it means they are well!!! I think it quite exceptional to have a person that really wants to hear. Each of us has our burdens, and some people just don't want more. This is such a hard subject. Love you guys, Lori
I 'm the same as Linda. It frustates my husband that I'm my cheerful self when talking to or visiting with everyone. I try to keep the focus on them. I don't want to be a downer or be perceived as complaining, which I am not. I' ve never felt I was a victim nor have I ever questioned God. You know that I trust Him in my circumstances completely.
You know that He is ever-present in my life and that I experience His comfort and His peace through Christ that surpasses all human understanding. Philippians 4:7.
This is what gets me through the unrelenting, all-consuming pain. I am deeply humbled, grateful and immeasurably blessed and know this life is but the blink of an eye in light of all eternity. So I have hope and assurance of what is to come.
"Now faith is confidence in what we hope for and assurance about what we do not see." Hebrews 11:1
Warmest regards and many prayers, Sunnyflower. 😊🙏
@jesfactsmon, @sunnyflower TOUCHE! I can be verryyyyy deceiving to others who are truly clueless about my disabilities. I wouldn't really have it any other way though. My elite crew (and that means you guys) plus my Drs. know the real deal and I'm good with that.
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@jesfactsmon @sunnyflower
I get it. That can be the down side of wearing the smiling, "I'm fine" mask. Disability that's not visible, at least for me, is almost worse than using crutches. And neuropathy is one of the challenging ones. Not even the top neurospecialists can give us much positive help. Certainly no definitive cure. We can have all of the tests done and not be much closer to being pain free. Tests do help us understand to some extent what our bodies are doing. And I like knowing as much as I can.
Mental health unwellness can also be invisible, depending on the person and the illness. I was a master at wearing the mask. But that's a subject for a different forum. Our daughter understands completely, but our son seems blind to the pain my wife and I both live with.
I'm looking forward to my appointment with my neurologist next week, to learn the results of a couple of test retakes. As I said, I like knowing all I can. Maybe even a little OCD about it.
Jim