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Sarcoidosis and neuropathy

Posted by mznecie @mznecie, Jun 17, 2021

Does anyone here have sarcoidosis and neuropathl
y my neuropathy pain is lunbearable it's almost to the point where I'm ready to cut off my feet

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John, Volunteer Mentor | @johnbishop | Jun 17, 2021

Hello @mznecie, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Sorry to hear you have not been able to find any relief from your pain. @briansr @chesneydell1965 @lillian32 and @cb2287 have discussed sarcoidosis and neuropathy in other discussions and may be able to share their experiences with you. Here is some information I found that discusses small fiber neuropathy and sarcoidosis.

"Apr 12, 2016 — Small fiber neuropathy (SFN) occurs in roughly 40% of patients with sarcoidosis. Affected patients present with painful neuropathic symptoms and ..." -- Small fiber neuropathy common, vexing in sarcoidosis: https://www.mdedge.com/rheumatology/article/108001/lupus-connective-tissue-diseases/small-fiber-neuropathy-common-vexing

Are you able to share any treatments that you have tried or that were suggested by your doctor to help with the pain?

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isidoro | @isidoro | Feb 23, 2022

I suggest that you take a look in the peptide ARA-290.

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lauraharris111 | @lauraharris111 | Apr 15, 2022

I was just diagnosed with Sarcoidosis and Emphysema... but it's been affecting my feet Terribly bad.. hard to walk sometimes. My first appt at mayo is May 3

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John, Volunteer Mentor | @johnbishop | Apr 15, 2022
In reply to @lauraharris111 "I was just diagnosed with Sarcoidosis and Emphysema... but it's been affecting my feet Terribly bad....." + (show)
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I was just diagnosed with Sarcoidosis and Emphysema... but it's been affecting my feet Terribly bad.. hard to walk sometimes. My first appt at mayo is May 3

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Welcome @lauraharris111, I'm glad to hear you have an upcoming appointment setup at Mayo Clinic. I know it's always helpful for me to write down questions when seeing a doctor for a new diagnosis. Do you have a list of questions to ask at your upcoming appointment?

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mch28 | @mch28 | Feb 19 12:02pm

Hi all, i’m new at this. My name is Tina. I was diagnosed with sarcoidosis of the lungs from three nodules 2-2.3 cm that were non-caseating. The biopsy was negative for cancer. I have had severe pain all over my body before I was diagnosed. The spots on my lungs were found when I was hospitalized with sepsis. I wasn’t sure if the pain was rheumatoid arthritis, but I never expected sarcoidosis. I’ve had neuropathy in my hand up to my elbow and parts of my calves and feet. Maybe it’s more like numbness and tingling. What do you take for the pain? I have been taking two 650 Tylenol every day in the morning and at night. And nothing seems to work. Thank you

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