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.
Connect
Connect
Like
Helpful
Hug
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.
-
Like -
Helpful -
Hug
2 Reactions