IVIG therapy intravenous immunoglobulin. It helps build up your immune system. It has been known to slow down the progression of neuropathy. IVIG therapy can also help with nerve regeneration. It takes approximately six months before you see the difference. If stopped the neuropathy will progress really fast. Once you are on it you are supposed to be on it for life. It is expensive but you can get the medication discounted through the manufacturers patient assistance program.
I have been on IVIG infusions for about two months, every two weeks. Because of a little "sleepy" feeling in my fingertips ten years ago, I was diagnosed with Idiopathic Peripheral Neuropathy, without any further recommended action. About a year ago I began to have a little "sleepy" feeling in my feet, which started progressing about three months ago. I went to another neurologist this February and asked to have the cause diagnosed, if possible, to determine a treatment.
About the first of March I was diagnosed with Chronic Inflammatory Demyelinating Polyradiculoneuritis (CIDP) after imaging tests, nerve tests, spinal tap, etc., and started IVIG infusions. The nurse told me I should have started the IVIG treatment years ago. I am in no pain, but have occasional cramps, weaker legs with poorer balance, and the "sleepy" feeling in my feet and mostly lower legs. If the infusions do not stop, slow, or reverse this neuropathy, what are the progressive signs and symptoms? I want to know what to expect for any scenario. I understand IVIG therapy may be required for years. Will I develop constant serious pain, be on a "walker," or what??? š I am only eighty-seven years of age. My goal since about the age of twenty is to reach one hundred being mobile and able to think.
I live in Texas which is not a medical marijuana state. If you listen to her lectures on YouTube she has done a study on marijuana and neuropathy. Marijuana has shown benefits in nerve regeneration. Israel and a couple of other countries have a ton of studies. I have read articles in the medical journal of neurology. My neurologist signed me up for them since I went through RN school. If I lived in a medical marijuana state I would make my own edibles because of all the chemicals they add plus I am asthmatic. I am allergic to over 50 different medications including Lycia and neurotin.
The only other thing is I take OxyContin and OxyContin for pain muscle spasms Soma. I am allergic to baclofen which is what most people recommend.
There is a prescription pain cream compounded especially for me my the neurologist.
Here are the ingredients ( just an fyi if you try it wear a really big pair of socks to bed itās sticky) One of the ingredients is a long lasting lidocaine
Prescription
Pain cream
2% Bacflofen
6% gabapentin
10% ketamine HCL
2% cyclobenzaprine
10% Diclofenac Sodium
2.5% tetracaine HCL
25% propylene
10% lipoderm
I have been on IVIG infusions for about two months, every two weeks. Because of a little "sleepy" feeling in my fingertips ten years ago, I was diagnosed with Idiopathic Peripheral Neuropathy, without any further recommended action. About a year ago I began to have a little "sleepy" feeling in my feet, which started progressing about three months ago. I went to another neurologist this February and asked to have the cause diagnosed, if possible, to determine a treatment.
About the first of March I was diagnosed with Chronic Inflammatory Demyelinating Polyradiculoneuritis (CIDP) after imaging tests, nerve tests, spinal tap, etc., and started IVIG infusions. The nurse told me I should have started the IVIG treatment years ago. I am in no pain, but have occasional cramps, weaker legs with poorer balance, and the "sleepy" feeling in my feet and mostly lower legs. If the infusions do not stop, slow, or reverse this neuropathy, what are the progressive signs and symptoms? I want to know what to expect for any scenario. I understand IVIG therapy may be required for years. Will I develop constant serious pain, be on a "walker," or what??? š I am only eighty-seven years of age. My goal since about the age of twenty is to reach one hundred being mobile and able to think.
I have more of an advanced form of neuropathy. The IVIG keeps it from progressing if you go off of it the neuropathy progresses really fast.
You get hammertoes- they blister
I almost lost my toe amputation is common with neuropathy
I canāt feel my hands and cutting them needing stitches
I have tremors (motor part of neuropathy) my husband has to cut up my food/I canāt drink out of a bottle or glass of water it pours all over you I have to use a cup with lid.
Loss of bladder control
CAN- cardiac autonomic neuropathy- they canāt control your blood pressure and you get tachycardia/ bradycardia
Nothing can be done ( given 8 yrs to live)
Canāt feel my legs loosing my balance and falling
Dizziness
Gastroparis+ slowing digestion so food sits on your stomach for days causing nausea and vomiting
It affects any organs that have nerves including brain
If you can stop it by taking IVIG therapy. I would do it in a heart beat.
I have Sjogren's caused SFN in my legs resulting in loss of balance. It was diagnosed by a new (to me) rheumatologist who reccognised my symptoms and lab results as being produced by Sjogren's. I had to do my own research and show a neurologist (he had seen twice before and didn't know what I had.)the treatment for it. Since I was also low gamma globulin, it was an easy call. I have been on it since Sept 23. I managed to convince my docs to add Rituximab to my treatment. I finally saw results yesterday that the removal of B lymphocytes was working. It had been a little over a month. I do feel better and am starting PT. Full steam ahead. My advice? Keep looking 'Til you find good docs. Be the squeeky wheel. Do your research, read all you can. You know your body better than anyone. But be prepared to listlen to the docs. Some of them do know.
Iām in Australia and going in for my first round of 5 next week. Firstly diagnosed with SFN then LFN as well and now CIDP so by process of elimination ie lumbar puncture mri nerve tests here we are ā¦.fingers are crossed.
Hi! Iām from australia too, with sfn symptoms and autonomic symptoms like dry mouth since a vaccine 5 weeks ago. not sure if thereās a way to message me or not, but iād really love to learn who diagnosed your sfn and how did they determine you had it - was the lumbar puncture the final decider ? i know thereās a type of antibody they can test for as well. no idea whatās available in this country!
Hi! Iām from australia too, with sfn symptoms and autonomic symptoms like dry mouth since a vaccine 5 weeks ago. not sure if thereās a way to message me or not, but iād really love to learn who diagnosed your sfn and how did they determine you had it - was the lumbar puncture the final decider ? i know thereās a type of antibody they can test for as well. no idea whatās available in this country!
I have been on IVIG infusions for about two months, every two weeks. Because of a little "sleepy" feeling in my fingertips ten years ago, I was diagnosed with Idiopathic Peripheral Neuropathy, without any further recommended action. About a year ago I began to have a little "sleepy" feeling in my feet, which started progressing about three months ago. I went to another neurologist this February and asked to have the cause diagnosed, if possible, to determine a treatment.
About the first of March I was diagnosed with Chronic Inflammatory Demyelinating Polyradiculoneuritis (CIDP) after imaging tests, nerve tests, spinal tap, etc., and started IVIG infusions. The nurse told me I should have started the IVIG treatment years ago. I am in no pain, but have occasional cramps, weaker legs with poorer balance, and the "sleepy" feeling in my feet and mostly lower legs. If the infusions do not stop, slow, or reverse this neuropathy, what are the progressive signs and symptoms? I want to know what to expect for any scenario. I understand IVIG therapy may be required for years. Will I develop constant serious pain, be on a "walker," or what??? š I am only eighty-seven years of age. My goal since about the age of twenty is to reach one hundred being mobile and able to think.
My neurologist said i have CIPD. Talked into having 5 days of IVIG treatments. No relief only
a rash over entire body following IVIG. Now on Dupixent No more IVIG for me.
Hi! Iām from australia too, with sfn symptoms and autonomic symptoms like dry mouth since a vaccine 5 weeks ago. not sure if thereās a way to message me or not, but iād really love to learn who diagnosed your sfn and how did they determine you had it - was the lumbar puncture the final decider ? i know thereās a type of antibody they can test for as well. no idea whatās available in this country!
I was diagnosed with sfn in 2020 by skin punch biopsy. My neurologist said that was his immediate tell sign for my sfn because mine was not good. I was actually relieved to get some diagnosis after being in terrible pain for so long. My insurance will not cover IVIG for SFN deeming it as exploratory. So far mine is idiopathic, but still searching for the cause. I do not have diabetes. I have an autoimmune disease, but they do not know what it is. I've tested positive for scleroderma but "don't show enough signs" for that. I do show signs of lupus and other diseases. It is very painful and some days are debilitating. I sure hope you get all the good doctors and help you need.
I have been on IVIG infusions for about two months, every two weeks. Because of a little "sleepy" feeling in my fingertips ten years ago, I was diagnosed with Idiopathic Peripheral Neuropathy, without any further recommended action. About a year ago I began to have a little "sleepy" feeling in my feet, which started progressing about three months ago. I went to another neurologist this February and asked to have the cause diagnosed, if possible, to determine a treatment.
About the first of March I was diagnosed with Chronic Inflammatory Demyelinating Polyradiculoneuritis (CIDP) after imaging tests, nerve tests, spinal tap, etc., and started IVIG infusions. The nurse told me I should have started the IVIG treatment years ago. I am in no pain, but have occasional cramps, weaker legs with poorer balance, and the "sleepy" feeling in my feet and mostly lower legs. If the infusions do not stop, slow, or reverse this neuropathy, what are the progressive signs and symptoms? I want to know what to expect for any scenario. I understand IVIG therapy may be required for years. Will I develop constant serious pain, be on a "walker," or what??? š I am only eighty-seven years of age. My goal since about the age of twenty is to reach one hundred being mobile and able to think.
I have been on IVIG monthly for 2 years. It was prescribed because of an autoimmune related sudden and severe peripheral neuropathy, affecting sensation,
balance, and mobility. As I understand it from my neurologists, IVIG stops further inflammation and damage to the peripheral nerves, and therefore allows physical therapy to build up balance and strength. That has happened slowly over these two years. I still use a walker and wheelchair to get around, and the pain of early peripheral neuropathy has stopped.
I have learned to accept this big bump in the road of my plans for my āgolden years.ā I still have many things working well for me, and hope that for you, too.
I have more of an advanced form of neuropathy. The IVIG keeps it from progressing if you go off of it the neuropathy progresses really fast.
You get hammertoes- they blister
I almost lost my toe amputation is common with neuropathy
I canāt feel my hands and cutting them needing stitches
I have tremors (motor part of neuropathy) my husband has to cut up my food/I canāt drink out of a bottle or glass of water it pours all over you I have to use a cup with lid.
Loss of bladder control
CAN- cardiac autonomic neuropathy- they canāt control your blood pressure and you get tachycardia/ bradycardia
Nothing can be done ( given 8 yrs to live)
Canāt feel my legs loosing my balance and falling
Dizziness
Gastroparis+ slowing digestion so food sits on your stomach for days causing nausea and vomiting
It affects any organs that have nerves including brain
If you can stop it by taking IVIG therapy. I would do it in a heart beat.
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I have been on IVIG infusions for about two months, every two weeks. Because of a little "sleepy" feeling in my fingertips ten years ago, I was diagnosed with Idiopathic Peripheral Neuropathy, without any further recommended action. About a year ago I began to have a little "sleepy" feeling in my feet, which started progressing about three months ago. I went to another neurologist this February and asked to have the cause diagnosed, if possible, to determine a treatment.
About the first of March I was diagnosed with Chronic Inflammatory Demyelinating Polyradiculoneuritis (CIDP) after imaging tests, nerve tests, spinal tap, etc., and started IVIG infusions. The nurse told me I should have started the IVIG treatment years ago. I am in no pain, but have occasional cramps, weaker legs with poorer balance, and the "sleepy" feeling in my feet and mostly lower legs. If the infusions do not stop, slow, or reverse this neuropathy, what are the progressive signs and symptoms? I want to know what to expect for any scenario. I understand IVIG therapy may be required for years. Will I develop constant serious pain, be on a "walker," or what??? š I am only eighty-seven years of age. My goal since about the age of twenty is to reach one hundred being mobile and able to think.
Thank you so much for the info. Appreciate it!😊
I have more of an advanced form of neuropathy. The IVIG keeps it from progressing if you go off of it the neuropathy progresses really fast.
You get hammertoes- they blister
I almost lost my toe amputation is common with neuropathy
I canāt feel my hands and cutting them needing stitches
I have tremors (motor part of neuropathy) my husband has to cut up my food/I canāt drink out of a bottle or glass of water it pours all over you I have to use a cup with lid.
Loss of bladder control
CAN- cardiac autonomic neuropathy- they canāt control your blood pressure and you get tachycardia/ bradycardia
Nothing can be done ( given 8 yrs to live)
Canāt feel my legs loosing my balance and falling
Dizziness
Gastroparis+ slowing digestion so food sits on your stomach for days causing nausea and vomiting
It affects any organs that have nerves including brain
If you can stop it by taking IVIG therapy. I would do it in a heart beat.
I have Sjogren's caused SFN in my legs resulting in loss of balance. It was diagnosed by a new (to me) rheumatologist who reccognised my symptoms and lab results as being produced by Sjogren's. I had to do my own research and show a neurologist (he had seen twice before and didn't know what I had.)the treatment for it. Since I was also low gamma globulin, it was an easy call. I have been on it since Sept 23. I managed to convince my docs to add Rituximab to my treatment. I finally saw results yesterday that the removal of B lymphocytes was working. It had been a little over a month. I do feel better and am starting PT. Full steam ahead. My advice? Keep looking 'Til you find good docs. Be the squeeky wheel. Do your research, read all you can. You know your body better than anyone. But be prepared to listlen to the docs. Some of them do know.
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2 ReactionsHi! Iām from australia too, with sfn symptoms and autonomic symptoms like dry mouth since a vaccine 5 weeks ago. not sure if thereās a way to message me or not, but iād really love to learn who diagnosed your sfn and how did they determine you had it - was the lumbar puncture the final decider ? i know thereās a type of antibody they can test for as well. no idea whatās available in this country!
SFN is diagnosed with a biopsy in three locations on your leg. Sometimes they only do two biopsies.
My neurologist said i have CIPD. Talked into having 5 days of IVIG treatments. No relief only
a rash over entire body following IVIG. Now on Dupixent No more IVIG for me.
I was diagnosed with sfn in 2020 by skin punch biopsy. My neurologist said that was his immediate tell sign for my sfn because mine was not good. I was actually relieved to get some diagnosis after being in terrible pain for so long. My insurance will not cover IVIG for SFN deeming it as exploratory. So far mine is idiopathic, but still searching for the cause. I do not have diabetes. I have an autoimmune disease, but they do not know what it is. I've tested positive for scleroderma but "don't show enough signs" for that. I do show signs of lupus and other diseases. It is very painful and some days are debilitating. I sure hope you get all the good doctors and help you need.
I have been on IVIG monthly for 2 years. It was prescribed because of an autoimmune related sudden and severe peripheral neuropathy, affecting sensation,
balance, and mobility. As I understand it from my neurologists, IVIG stops further inflammation and damage to the peripheral nerves, and therefore allows physical therapy to build up balance and strength. That has happened slowly over these two years. I still use a walker and wheelchair to get around, and the pain of early peripheral neuropathy has stopped.
I have learned to accept this big bump in the road of my plans for my āgolden years.ā I still have many things working well for me, and hope that for you, too.
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2 ReactionsThank you. Apparently my neuropathy is progressing slowly. I will keep up with the recommended IVIG infusions.