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Member Neuropathy Journey Stories: What's Yours?
Neuropathy | Last Active: Oct 17 5:52am | Replies (571)Comment receiving replies
in reply to rwinney, I have the same frustration. I have all the symptoms of sfn and one doctor said that is what it is, but no one seems to feel I should have the skin biopsy. Who did it for you? I also have 100% of the symptoms of polymyalgia rheumatica, but still don't know who to take care of me. My primary doctor is sending me to a rheumatologist in early June, but I went to one two years ago and she told me she didn't know what to do for me except to prescribe Lyrica which put into the ER. My question: is this the right specialist to see, i.e., a rheumatologist?
Replies to "in reply to rwinney, I have the same frustration. I have all the symptoms of sfn..."
@maryflorida Hi there. I'm thankful for @johnbishop jumping in. He's got great factual links to share. My neurologist did my skin biopsy. I saw a rheumatologist prior (on my own) because I was wanting to rule out fibromyalgia. It sounds like your upcoming appointment will prove useful. I believe when a Dr tells you that they dont know what to do for you, it's time for a 2nd opinion to verify that is indeed the case. Seeing all these Drs gets exhausting but, when you find the right one it can help enormously. I agree on journaling. The first 2 years of my decline, I journaled symptoms, drugs, procedures. There is alot of physical and mental stress when you dont know whats wrong and are in pain and all over the map. Journaling kept me organized when I'd otherwise lose my thoughts. All the best for your upcoming appointment. Keep persevering. You know your body best.
Be well,
Rachel
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Hi @maryflorida, I thought I would jump in and offer some information I've found that may be helpful. A rheumatologist diagnosed my polymyalgia rheumatica (PMR) and a neurologist diagnosed my small fiber peripheral neuropathy.
What is a Rheumatologist?: https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Health-Care-Team/What-is-a-Rheumatologist
What is a neurologist?: https://www.medicalnewstoday.com/articles/326717#about
And something that really jumped out at me -- What Our Colleagues Should Know: Neurologists & Rheumatologists Must Communicate:
-- https://www.the-rheumatologist.org/article/colleagues-know-neurologists-rheumatologists-must-communicate/
You mentioned in your first post that your rheumatologist prescribed the Gabapentin and that made you sick and then they prescribed Lyrica and that sent you to the ER. It might be helpful to write down a list of all your symptoms and maybe keep a daily log of your pain levels along with any questions you have for the rheumatologist. One question I would have for the rheumatologist or neurologist for any drug that is prescribed - how does this drug work to treat my symptoms?
Can you update us on how your appointment goes with the rheumatologist in June?