My son was diagnosed with small fiber sensory neuropathy. He's currently 20 yo. The end of September he finished 7 ketamine infusions which helped and gave him hope. We knew that booster IVs would be necessary but depending on my son, that would determine the booster time. The IV treatments help a lot but are not are financially sustainable (insurance does not cover). We are looking for ketamine lozenges and or nasal spray but have not been successful. My son's neurologist has approved these forms. I was wondering if you've tried or looked into ketamine infusions and if you've found anything else to help. Thank you for your time.
My son was diagnosed with small fiber sensory neuropathy. He's currently 20 yo. The end of September he finished 7 ketamine infusions which helped and gave him hope. We knew that booster IVs would be necessary but depending on my son, that would determine the booster time. The IV treatments help a lot but are not are financially sustainable (insurance does not cover). We are looking for ketamine lozenges and or nasal spray but have not been successful. My son's neurologist has approved these forms. I was wondering if you've tried or looked into ketamine infusions and if you've found anything else to help. Thank you for your time.
Hello @sfsn247pain, Welcome to Connect. I can't begin to imagine how difficult it must be for your young son to have to deal with this terrible condition. There is another discussion on ketamine that mentions a nasal spray and may have some posts about other forms:
-- Ketamine for chronic pain: https://connect.mayoclinic.org/discussion/ketamine-for-chronic-pain/
I think you might have to go to a compounding pharmacy that can make it for you but I'm not sure. Did your son's neurologist have any suggestions on where you could get the lozenges or nasal spray?
I have used both ketamine nasal spray and ketamine lozenges in the past for other conditions. I have used Pavilion Compounding Pharmacy, Atlanta, or Care First Specialty Pharmacy, NJ, for the spray, and a pharmacy in Tampa for the lozenges. The medications can be shipped directly to you.
My SNF has been verified by a biopsy. Yesterday with rain on its way every fiber in my body was screaming at me. I am allergic to so many medicines that even the common ones I can’t take. I also have fibromyalgia. My rheumatologist does not know what else to do. Can a neurologist help?
I have had neuropathy since 2022 when I had a Moderna Booster shot, others being Pfizer . Lyme diagnosis but ID specialist said not a rash from Lyme. Rash all over body, burning, no itching, with 5 months of steroid treatments followed by 10 months of Dupixent which cleared up rash but neuropathy was mild and got worst since that time. Located in the mid-torso, arms and legs. No feet or hands like in most cases reported. I have not been diagnosed with diabetes or pre-diabetes. I had 9 ALA IVs with no effect plus supplements especially to control inflammation. I had full neurological testing including blood tests and EMG. Recent SFN diagnosed by Cleveland Clinic. I have seen 4 neurologists and all recommended Gabapentin each one increasing the dose. The burning in these areas is a daily challenge!!! Any suggestions. I would appreciate any help.
I have had neuropathy since 2022 when I had a Moderna Booster shot, others being Pfizer . Lyme diagnosis but ID specialist said not a rash from Lyme. Rash all over body, burning, no itching, with 5 months of steroid treatments followed by 10 months of Dupixent which cleared up rash but neuropathy was mild and got worst since that time. Located in the mid-torso, arms and legs. No feet or hands like in most cases reported. I have not been diagnosed with diabetes or pre-diabetes. I had 9 ALA IVs with no effect plus supplements especially to control inflammation. I had full neurological testing including blood tests and EMG. Recent SFN diagnosed by Cleveland Clinic. I have seen 4 neurologists and all recommended Gabapentin each one increasing the dose. The burning in these areas is a daily challenge!!! Any suggestions. I would appreciate any help.
Welcome @clutch541, I know it must be challenging and difficult trying to manage the burning symptoms on a daily basis. I don't think you are alone as many other members have posted similar symptoms. You might find it helpful to scan through these discussions I found on Connect when searching for "burning all over the body" - https://connect.mayoclinic.org/search/discussions/?search=burning%20all%20over%20the%20body.
Welcome @clutch541, I know it must be challenging and difficult trying to manage the burning symptoms on a daily basis. I don't think you are alone as many other members have posted similar symptoms. You might find it helpful to scan through these discussions I found on Connect when searching for "burning all over the body" - https://connect.mayoclinic.org/search/discussions/?search=burning%20all%20over%20the%20body.
Thanks for your response and will visit the site that you mention. The gabapentin has marginally helped and I have talked to others that said increasing the dose didn't help. I have taken it for a long time now and have to be careful with this drug and its side effects. I take a small dose, half pill, of tramadol which helps with handling the burning so I can get some sleep. It is an opioid so I am careful.
I have had neuropathy since 2022 when I had a Moderna Booster shot, others being Pfizer . Lyme diagnosis but ID specialist said not a rash from Lyme. Rash all over body, burning, no itching, with 5 months of steroid treatments followed by 10 months of Dupixent which cleared up rash but neuropathy was mild and got worst since that time. Located in the mid-torso, arms and legs. No feet or hands like in most cases reported. I have not been diagnosed with diabetes or pre-diabetes. I had 9 ALA IVs with no effect plus supplements especially to control inflammation. I had full neurological testing including blood tests and EMG. Recent SFN diagnosed by Cleveland Clinic. I have seen 4 neurologists and all recommended Gabapentin each one increasing the dose. The burning in these areas is a daily challenge!!! Any suggestions. I would appreciate any help.
As I mentioned in an earlier inquiry I have Small Fiber neuropathy as diagnosed by the Cleveland Clinic with a biopsy. My question is has anyone been treated by or familiar with the work of Dr. Anne Oaklander who was given a grant to study this condition and treatment: remove the "neurotoxic" conditions causing the damage so that the small nerves can grow back?
I have been suffering for some time now with the constant burning in my legs, torso and arms with only brief periods of relief. At 80 years old it is a daunting task having the energy to deal with a solution and only Gabapentin recommended and higher dosages by Neurologists. Thanks for your feedback on this issue.
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My son was diagnosed with small fiber sensory neuropathy. He's currently 20 yo. The end of September he finished 7 ketamine infusions which helped and gave him hope. We knew that booster IVs would be necessary but depending on my son, that would determine the booster time. The IV treatments help a lot but are not are financially sustainable (insurance does not cover). We are looking for ketamine lozenges and or nasal spray but have not been successful. My son's neurologist has approved these forms. I was wondering if you've tried or looked into ketamine infusions and if you've found anything else to help. Thank you for your time.
Hello @sfsn247pain, Welcome to Connect. I can't begin to imagine how difficult it must be for your young son to have to deal with this terrible condition. There is another discussion on ketamine that mentions a nasal spray and may have some posts about other forms:
-- Ketamine for chronic pain:
https://connect.mayoclinic.org/discussion/ketamine-for-chronic-pain/
I think you might have to go to a compounding pharmacy that can make it for you but I'm not sure. Did your son's neurologist have any suggestions on where you could get the lozenges or nasal spray?
-
Like -
Helpful -
Hug
1 ReactionI have used both ketamine nasal spray and ketamine lozenges in the past for other conditions. I have used Pavilion Compounding Pharmacy, Atlanta, or Care First Specialty Pharmacy, NJ, for the spray, and a pharmacy in Tampa for the lozenges. The medications can be shipped directly to you.
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Like -
Helpful -
Hug
3 ReactionsWho gave you the skin biopsy?
I have had neuropathy since 2022 when I had a Moderna Booster shot, others being Pfizer . Lyme diagnosis but ID specialist said not a rash from Lyme. Rash all over body, burning, no itching, with 5 months of steroid treatments followed by 10 months of Dupixent which cleared up rash but neuropathy was mild and got worst since that time. Located in the mid-torso, arms and legs. No feet or hands like in most cases reported. I have not been diagnosed with diabetes or pre-diabetes. I had 9 ALA IVs with no effect plus supplements especially to control inflammation. I had full neurological testing including blood tests and EMG. Recent SFN diagnosed by Cleveland Clinic. I have seen 4 neurologists and all recommended Gabapentin each one increasing the dose. The burning in these areas is a daily challenge!!! Any suggestions. I would appreciate any help.
Welcome @clutch541, I know it must be challenging and difficult trying to manage the burning symptoms on a daily basis. I don't think you are alone as many other members have posted similar symptoms. You might find it helpful to scan through these discussions I found on Connect when searching for "burning all over the body" - https://connect.mayoclinic.org/search/discussions/?search=burning%20all%20over%20the%20body.
Has the gabapentin provided any relief?
Thanks for your response and will visit the site that you mention. The gabapentin has marginally helped and I have talked to others that said increasing the dose didn't help. I have taken it for a long time now and have to be careful with this drug and its side effects. I take a small dose, half pill, of tramadol which helps with handling the burning so I can get some sleep. It is an opioid so I am careful.
-
Like -
Helpful -
Hug
3 ReactionsTry Mama Bear oasis magnesium lotion. It brings down burning for a few hours. Another thing that seemed to help me is Nortriptyline 10mg at night.
Thanks! Not familiar with this drug will look it up.
As I mentioned in an earlier inquiry I have Small Fiber neuropathy as diagnosed by the Cleveland Clinic with a biopsy. My question is has anyone been treated by or familiar with the work of Dr. Anne Oaklander who was given a grant to study this condition and treatment: remove the "neurotoxic" conditions causing the damage so that the small nerves can grow back?
I have been suffering for some time now with the constant burning in my legs, torso and arms with only brief periods of relief. At 80 years old it is a daunting task having the energy to deal with a solution and only Gabapentin recommended and higher dosages by Neurologists. Thanks for your feedback on this issue.