1. < Neuropathy
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Looking to connect with people who have non-diabetic neuropathy

Posted by Ann broussard @user_ch98d0b5c, Aug 6, 2018

Would. Like to find people with this issue

Interested in more discussions like this? Go to the Neuropathy Support Group.

Profile picture for John, Volunteer Mentor
Mentor
John, Volunteer Mentor | @johnbishop | Jun 15, 2023
In reply to @roslyn2314 "Has anybody with SFN and LFN undergone IVIG treatment with any success ?" + (show)
Profile picture for roslyn2314 @roslyn2314

Has anybody with SFN and LFN undergone IVIG treatment with any success ?

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Hi @roslyn2314 - You might want to read through the following discussion to learn what others have shared on the IVIG treatments for neuropathy.

--- IVIG Infusions: https://connect.mayoclinic.org/discussion/ivig-infusions/

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roslyn2314 | @roslyn2314 | Jun 15, 2023

Thank you John for helping us in our battle and organising our comments and questions so we can be informed and also have some support.
Looks like it’s a mixed bag of success and failure for IVIG…worth a try though. Anything is. It’s a monster….

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victoriairis | @victoriairis | Jun 15, 2023
In reply to @victoriairis "This is a reply to Barrye and Tomkipp and all nondiabetic neuropathy suffers. Recently (5 days..." + (show)
Profile picture for victoriairis @victoriairis

This is a reply to Barrye and Tomkipp and all nondiabetic neuropathy suffers. Recently (5 days ago) I was put on Naltrexone 3mg. This drug has shown promising results with very few side effects. The drug is being used off-label for pain and inflammation. In large doses, it is used for alcoholics. I DO NOT DRINK AT ALL. Your doctor of Internal medicine writes the prescription. You can only get it at a Compounding Pharmacy. I have that kind of pharmacy near me here in the Lehigh Valley Pennsyvaliana. The name of the pharmacy is Dorneyville Compounding Pharmacy. The pharmacist is Rich. He is very knowledgeable. Do your research and do not spend thousands of dollars on all the rip-off cures and chiropractors, foot doctors, expensive machines, etc. We all know there is no cure we simply want relief that works. So for now I am taking this drug. I am also waiting for my appointment to get recertified for medical marijuana. This is a long process here in PA. You have to get a patient clearance from a physiatrist. That is sent to the state of PA then you pay $50.00 dollars for the card that is good for one year. You then go to a PA Dispensary. Only talk to a pharmacist not a salesperson at our dispensary you are given a 30-minute appointment with a pharmacist.
The process is long to get the correct strain of marijuana and the cost can be very high. Though prices have come down a bit here in PA. I have tried this for another condition years ago and it did not work. I do not know yet if I can take marijuana with the new drug I am on Naltrexone. I certainly want to give this a chance.
The Best to everyone !
Vicki

Compounding Pharmacy. I have that kind of pharmacy near me in the Lehig Valley in Pennsylvania. The Pharmacy is Dornyep

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Correction, the dosage for Naltrexone is 2mg. not 3mg.
Sorry.
Vicki

REPLY
Profile picture for victoriairis
victoriairis | @victoriairis | Jun 15, 2023
In reply to @victoriairis "This is a reply to Barrye and Tomkipp and all nondiabetic neuropathy suffers. Recently (5 days..." + (show)
Profile picture for victoriairis @victoriairis

This is a reply to Barrye and Tomkipp and all nondiabetic neuropathy suffers. Recently (5 days ago) I was put on Naltrexone 3mg. This drug has shown promising results with very few side effects. The drug is being used off-label for pain and inflammation. In large doses, it is used for alcoholics. I DO NOT DRINK AT ALL. Your doctor of Internal medicine writes the prescription. You can only get it at a Compounding Pharmacy. I have that kind of pharmacy near me here in the Lehigh Valley Pennsyvaliana. The name of the pharmacy is Dorneyville Compounding Pharmacy. The pharmacist is Rich. He is very knowledgeable. Do your research and do not spend thousands of dollars on all the rip-off cures and chiropractors, foot doctors, expensive machines, etc. We all know there is no cure we simply want relief that works. So for now I am taking this drug. I am also waiting for my appointment to get recertified for medical marijuana. This is a long process here in PA. You have to get a patient clearance from a physiatrist. That is sent to the state of PA then you pay $50.00 dollars for the card that is good for one year. You then go to a PA Dispensary. Only talk to a pharmacist not a salesperson at our dispensary you are given a 30-minute appointment with a pharmacist.
The process is long to get the correct strain of marijuana and the cost can be very high. Though prices have come down a bit here in PA. I have tried this for another condition years ago and it did not work. I do not know yet if I can take marijuana with the new drug I am on Naltrexone. I certainly want to give this a chance.
The Best to everyone !
Vicki

Compounding Pharmacy. I have that kind of pharmacy near me in the Lehig Valley in Pennsylvania. The Pharmacy is Dornyep

Jump to this post

Correction. 2mg of Naltrexone, not 3mg.
Sorry,
Vicki

REPLY
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efgh1020 | @efgh1020 | Jun 16, 2023
In reply to @roslyn2314 "Has anybody with SFN and LFN undergone IVIG treatment with any success ?" + (show)
Profile picture for roslyn2314 @roslyn2314

Has anybody with SFN and LFN undergone IVIG treatment with any success ?

Jump to this post

I have Long fiber axonal neuropathy, probably caused by an autoimmune reaction to either spinal fusion surgery, medication, anesthesia, or unrelated infections before and after surgery.
Two neurologists agreed that iVIG could be helpful in reducing nerve inflammation, and monthly infusions, along with PT in a pool and at a clinic, have helped build up my quad function. This has allowed me to put more weight on my legs instead of my arms and shoulders when walking with a walker. My transfers are also smoother. This translates into no falls in months and greater confidence in moving around my house and deck on my walker. So, I will continue the infusions, even though the sessions each month take up about 5 afternoons.
I hope this helps.

REPLY
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barbaraberman | @barbaraberman | Jun 16, 2023

Has anyone ever bought those pills online? You know the type where someone talks for half hour, then you buy 6 bottles for over $200.00? If you have, do any of them work? They tend to have ingredients from far flung places.

REPLY
1 reply
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Mentor
John, Volunteer Mentor | @johnbishop | Jun 16, 2023
In reply to @barbaraberman "Has anyone ever bought those pills online? You know the type where someone talks for half..." + (show)
Profile picture for barbaraberman @barbaraberman

Has anyone ever bought those pills online? You know the type where someone talks for half hour, then you buy 6 bottles for over $200.00? If you have, do any of them work? They tend to have ingredients from far flung places.

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That's normally a big red flag for me and a resounding no way. But then I'm a cheapskate even when I'm hurting. 🙂

REPLY
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victoriairis | @victoriairis | Jun 17, 2023

Heidi, I wish you the very best always. This is my 8th day and I talk to the pharmacist every day. He still insists if we stick it out relief will come. The first two weeks are a bit difficult but headache and nausea will subside. Hang in don't give up!!!!
We have a horrid condition for sure.
Let me know how you are doing.
Vicki (victoriairis)

REPLY
Profile picture for John, Volunteer Mentor
Mentor
John, Volunteer Mentor | @johnbishop | Jun 17, 2023

Love your chart! Thought you might not have seen this discussion...

--- How do you plan your day and conserve energy? Are you a Spoonie?: https://connect.mayoclinic.org/discussion/how-do-you-plan-your-day-and-conserve-energy-are-you-a-spoonie/

REPLY
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lyleswan | @lyleswan | Jul 14, 2023
In reply to @amimiof4 "I also have pain in my shoulders. I do have an old injury, but I feel..." + (show)
Profile picture for amimiof4 @amimiof4

I also have pain in my shoulders. I do have an old injury, but I feel the pain is due to my muscle loss from the neuropathy.

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I, too, have developed fatigue in my quads when I walk. I was very active all my life and then was sedentary for long time due to several injuries. My doc thinks I am deconditioned and have muscle loss from not having exercised in a very long time. He said the fatigue could also be caused by my lower back issue.

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