Living with Neuropathy - Welcome to the group

Posted by Colleen Young @colleenyoung, Jul 14, 2017

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

Hi John, yes after being bounced around for 3 years every test and blood test possible, this is what my nerologist believes I have SFN or CIDP, he wants me to go for plasmapherisis I am not sure I want to do it,

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@friendz4

Hi John, yes after being bounced around for 3 years every test and blood test possible, this is what my nerologist believes I have SFN or CIDP, he wants me to go for plasmapherisis I am not sure I want to do it,

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Hi @friendz4 it's good to ask questions. I'm assuming you told your doctor you are not sure about the plamapherisis treatment. What did he say? I was not familiar with the treatment so did a search. I have no medical training or background but reading about it may help you feel a little more comfortable with it.

Plasma exchange treatment of peripheral neuropathy associated with plasma cell dyscrasia.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1027944/

Plasma Exchange in Neuroimmunological Disorders
https://jamanetwork.com/journals/jamaneurology/fullarticle/791917

Plasma Exchange for Peripheral Neuropathy
https://nyulangone.org/conditions/peripheral-neuropathy-in-adults/treatments/plasma-exchange-for-peripheral-neuropathy

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I read online that 24 million people in the US suffer from neuropathy. Do you think that's accurate?

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@pfbacon

I read online that 24 million people in the US suffer from neuropathy. Do you think that's accurate?

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@pfbacon I've read similar numbers. NIH says it's "more than" 20 million but I don't know where they get the numbers. I've also heard it's more than 80 million world-wide.
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet

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That's a lot. I hope that brilliant researchers get busy inventing better medicine for us. When anything new is invented, we'll hear about here before we hear about it anywhere else, right? (To me, "Better" means something that takes away the pain and numbness but doesn't make us sleepy or fat).

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@johnbishop

Hi @friendz4 it's good to ask questions. I'm assuming you told your doctor you are not sure about the plamapherisis treatment. What did he say? I was not familiar with the treatment so did a search. I have no medical training or background but reading about it may help you feel a little more comfortable with it.

Plasma exchange treatment of peripheral neuropathy associated with plasma cell dyscrasia.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1027944/

Plasma Exchange in Neuroimmunological Disorders
https://jamanetwork.com/journals/jamaneurology/fullarticle/791917

Plasma Exchange for Peripheral Neuropathy
https://nyulangone.org/conditions/peripheral-neuropathy-in-adults/treatments/plasma-exchange-for-peripheral-neuropathy

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Thanks so much for the information , I let him know I will think about it,he put me on prednisone pack and it’s actually making me much worse,I don’t know what I will do but I will keep you posted,I am very sensitive to meds,so I might have problems with the plasma also,I think some drs drive you crazy that’s where I am at now as I should have had a proper diagnosis a long time ago

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@pfbacon

That's a lot. I hope that brilliant researchers get busy inventing better medicine for us. When anything new is invented, we'll hear about here before we hear about it anywhere else, right? (To me, "Better" means something that takes away the pain and numbness but doesn't make us sleepy or fat).

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I would love the fat part. I weighed between 162 and 168lbs for over 30 years then the wasting part of Parsonage Turner Syndrome and I'm 89lbs. I still can walk but tire easily. Unable to sit for more than a few minutes.

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@friendz4 Remember Steroids in abundance will harm your liver @kidneys so be careful with the amount you get A Endocrinologist , Neurologist can help you just suggesting

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I know I aonky took them 3 times in my life because I have awful side effects from them

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@friendz4 Glad to hear this I to can't take alot of meds or high mg. instead I do holistic remedies

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I've tried all the holistics, did nothing. None of my doctors have mentioned taking steroids for neuropathy. I've taken them for asthma and had bad side effects: bloating, nervousness, metallic taste in the mouth, thrush.

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@pfbacon See what your Neurologist says I wouldn't take steriords for this since you,ve had bad side effects before.

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