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Small Fiber Neuropathy discouraged
I had minimal health issues until the fall of 2019. My general practioner dc'd a medication cold turkey. This caused small fiber neuropathy. It took two years to diagnose and treat. I spent two years in my husbands arms screaming and crying. In February of 2021 my neurologist placed me on 40 mg of prednisone. I reacted poorly, without pain relief. He was ruling out poly rheumatatica. In June the dictor removed Gabapentin from my allergy list . The nurse stated I would not have the same response. I did. It was hell. By this time the neurologist was uncomfortable taporing me off of prednisone. I have been taporing for slmost a year. The tapor is hell. Im currently on 6 mg. I am currently being treated for pain. The prednisone tapor is suppose to last until Dec. I lost almost everything in the last 3 years. I keep on trying. I wont stop trying to feel better.
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Sounds fantastic. But I would have to be seen at Mayo neurologist and have the money. Sorry spent last night crying. Doctor did call me back nothing can be done.. I sit in my chair and have pain. I used to be a person with endless hope. That's gone
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2 ReactionsThanks for your kindness. But Mayo Clinic us beyond my reach. They would give up too.
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2 ReactionsMy doctor thinks the neurology clinic is to hard to get into see someone. Even though my neuropathy stumped doctors. Caused by a sudden cessation of klonopin. Multiple frightening medication reactions. I'm on 3 medications and no doctor wants to prescribe anything. Yet my abilities are steadily decreasing. Pots I drink water and take salt, but compression stocking cause severe lower leg pain. And that's not even where I have pain. Akathisia never went away. She thinks maybe there is a small chance I could be reviewed for akathisia. I'm a throw away person. Even if I was seen at Mayo, they would give up too. I coined the phrase, Throw away patient" after I heard a nurse say that my file was hopeless. I was a Throw away
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2 Reactions@graysea, my heart goes out to you. It must be awful to feel like you are a throw away. It seems to have left you wihout hope. Feeling hopeless really is rock bottom, isn't it?
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1 ReactionThe doctors and nurses gave up. Many of my friends and family. My closest friends and family have not given up because they love me, not because they have hope. I don't think there is a doctor out there that would take me as a patient. Who would take me? It was a nurse that called me a "throw away " I guess I have believed her ever since
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3 ReactionsI live day to day. Hope is a memory
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1 ReactionThat’s cruel that one nurse’s comment defines you. That doesn’t seem just.
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2 ReactionsThinking of you today, @graysea. Your username makes me think of the foggy mornings on the East coast. It conjurs a blue gray color that is one of my favorite calming colors.
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1 ReactionWhat a kind thing for you to say. I hope you had a good spring day.
I remember beautiful spring days. I stayed in my chair and watched the world. Now laugh at this; I have about 40 coping mechanisms. But pain always wins. I sat in my chair remembering the past. Pain and nausea keep me company. I didn't reach out, pain was with me all day. It always is, everyday is the same. Everyday is the same
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1 ReactionMore portal messages telling me I have no options. This is their way of saying," no h ope" and good bye
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