I know the feeling....i was told my doctor" my nerves get on my nerves". I have tried almost everything over the 16 years i have had it. My best was when i was on ivig treatments but dr took me iff after 8 years😥. Hang in there..sometimes when i get all balled up..i change what i am doing..if you can take a short walk. It takes my mind off of my nerves.
Hi there. I'm wondering why on earth your Dr took you off of IVIG??? Is there a max number of years you can safely be on it? Was it about insurance? Did your condition change? Inquiring minds would like to know, if you don't mind sharing. Thank you.
Rachel
I have chronic inflammatory demyelinating polyneuropathy (CIDP), an incurable autoimmune disease that destroys the nerves in the legs/feet and arms/hands. Fortunately, I have very little damage in my arms, but I have lost 80% of the nerve function in both legs. (It’s a symmetrical disease.) I receive IVIG regularly to keep it from getting worse. I can use a cane inside our house, but have to be in a wheelchair away from home.
I have idiopathic small fiber peripheral polyneuropathy. I'm not familiar with the implication of the added "inflammatory". The neurologist has mentioned the demyelinating aspect, but never used it in the name of the particular neuropathy I have
I've seen others mention IVIG, but have never asked my neurologist about it. I had a spinal cord stimulator implant in June of 2017, and it made a major change in my pain level.
Finding a definitive cure for neuropathy would be great, but I'm not sure it will happen in my lifetime. Someday. In the meantime we do what we can to manage the changes as they come.
I have idiopathic small fiber peripheral polyneuropathy. I'm not familiar with the implication of the added "inflammatory". The neurologist has mentioned the demyelinating aspect, but never used it in the name of the particular neuropathy I have
I've seen others mention IVIG, but have never asked my neurologist about it. I had a spinal cord stimulator implant in June of 2017, and it made a major change in my pain level.
Finding a definitive cure for neuropathy would be great, but I'm not sure it will happen in my lifetime. Someday. In the meantime we do what we can to manage the changes as they come.
Jim, CIDP is a rare, incurable autoimmune form of neuropathy. It’s a “cousin” disease to multiple sclerosis. It causes constant inflammation of the nerves. IVIG calms the inflammation and, if the patient is lucky, prevents further damage. But CIDP is a progressive disease and most people will get worse, either quickly or slowly. It’s also a relapsing/remitting disease. I’ve had two serious relapses in less than three years, at times when I had thought I was doing well. Increasing my IVIG dose pulled me out of relapse both times.
Jim, CIDP is a rare, incurable autoimmune form of neuropathy. It’s a “cousin” disease to multiple sclerosis. It causes constant inflammation of the nerves. IVIG calms the inflammation and, if the patient is lucky, prevents further damage. But CIDP is a progressive disease and most people will get worse, either quickly or slowly. It’s also a relapsing/remitting disease. I’ve had two serious relapses in less than three years, at times when I had thought I was doing well. Increasing my IVIG dose pulled me out of relapse both times.
My youngest sister has had MS for quite a few years, as well as pn. I was tested negative for MS, for which I'm grateful. I feel embarrassed for talking about my pain when I read and hear the stories of others who are suffering way more than I. I'm reminded of how fortunate I am and how generously God has provided for me.
@johnbishop, Sensory Neuropathy differs from Peripheral Neuropathy in the nerve root innervation and body parts effected. Hope someone can help me with a more specific explanation.
@johnbishop, Sensory Neuropathy differs from Peripheral Neuropathy in the nerve root innervation and body parts effected. Hope someone can help me with a more specific explanation.
@memomsloan This might help:
Center for Peripheral Neuopathy The University of Chicago
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About Peripheral Neuropathy - Symptoms
What is Peripheral Neuropathy? | What Causes Peripheral Neuropathy? | Symptoms
3 TYPES OF PERIPHERAL NERVES
There are three types of peripheral nerves: motor, sensory and autonomic. Some neuropathies affect all three types of nerves, while others involve only one or two.
3 Types of Peripheral Nerves:
Motor
Sensory
Autonomic
Motor nerves send impulses from the brain and spinal cord to all of the muscles in the body. This permits people to do activities like walking, catching a baseball, or moving the fingers to pick something up. Motor nerve damage can lead to muscle weakness, difficulty walking or moving the arms, cramps, and spasms.
Sensory nerves send messages in the other direction—from the muscles back to the spinal cord and the brain. Special sensors in the skin and deep inside the body help people identify if an object is sharp, rough, or smooth, if it's hot or cold, or if a body part is still or in motion. Sensory nerve damage often results in tingling, numbness, pain, and extreme sensitivity to touch.
Autonomic nerves control involuntary or semi-voluntary functions, such as heart rate, blood pressure, digestion, and sweating. When the autonomic nerves are damaged, a person's heart may beat faster or slower. They may get dizzy when standing up, sweat excessively, or have difficulty sweating at all. In addition, autonomic nerve damage may result in difficulty swallowing, nausea, vomiting, diarrhea or constipation, problems with urination, abnormal pupil size, and sexual dysfunction.
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My youngest sister has had MS for quite a few years, as well as pn. I was tested negative for MS, for which I'm grateful. I feel embarrassed for talking about my pain when I read and hear the stories of others who are suffering way more than I. I'm reminded of how fortunate I am and how generously God has provided for me.
John, thank you for acknowledging God for His blessings to you. I feel the same way, I have significant issues with my PN but have friends and family suffering from Parkinsons, MS and other disorders. I would not trade my issues with any of them. God bless you, John. Terry
About 10 years ago, I began feeling "funny" sensations in my feet. I<br />
notified my dr. who used a small instrument to poke at toes/feet asking<br />
"can you feel that?" Yup, I could feel it so he said it was probably okay.<br />
It continued. Five years later, I developed cancer and underwent chemo for<br />
6 months and some radiation. Now, I have a full-blown case of neuropathy<br />
that extends from feet up to ankles but it is a different than the *lack of<br />
feeling* type - I feel everything. I can't stand on my bathmat because it<br />
hurts - how odd is that? Feet and ankles feel as though they are tightly<br />
bound much as if you'd wrapped duct tape tightly around feet and ankles<br />
many times. If my feet become too warm, they itch and there are frequent<br />
jabs of severe pain. Ankles swell by bedtime. So, before I go to bed at<br />
night, I stand on the cold garage floor for a few minutes to be sure the<br />
feet are cold enough to allow me to get some sleep. I take no pain meds<br />
(other than acetomenaphin) but take warfarin for a blood clot. I'm 80<br />
years old and have heard horror stories about the testing that is done to<br />
determine extent of nerve damage and am not in a mood to experience further<br />
discomfort unless something really can be accomplished. So far, the best<br />
therapy I've found is to keep your feet cool and apply a good foot cream<br />
both AM and PM. Just a note<br />
I'm 82 and had those tests done about three months ago. I was somewhat fearful and nervous leading up to the actual tests, but found there was nothing to worry about. Somewhat uncomfortable, true, but it goes pretty quickly and nothing that's "unbearable." Just do it.
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Hi there. I'm wondering why on earth your Dr took you off of IVIG??? Is there a max number of years you can safely be on it? Was it about insurance? Did your condition change? Inquiring minds would like to know, if you don't mind sharing. Thank you.
Rachel
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2 Reactions@sparshall
I have idiopathic small fiber peripheral polyneuropathy. I'm not familiar with the implication of the added "inflammatory". The neurologist has mentioned the demyelinating aspect, but never used it in the name of the particular neuropathy I have
I've seen others mention IVIG, but have never asked my neurologist about it. I had a spinal cord stimulator implant in June of 2017, and it made a major change in my pain level.
Finding a definitive cure for neuropathy would be great, but I'm not sure it will happen in my lifetime. Someday. In the meantime we do what we can to manage the changes as they come.
Jim
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2 ReactionsJim, CIDP is a rare, incurable autoimmune form of neuropathy. It’s a “cousin” disease to multiple sclerosis. It causes constant inflammation of the nerves. IVIG calms the inflammation and, if the patient is lucky, prevents further damage. But CIDP is a progressive disease and most people will get worse, either quickly or slowly. It’s also a relapsing/remitting disease. I’ve had two serious relapses in less than three years, at times when I had thought I was doing well. Increasing my IVIG dose pulled me out of relapse both times.
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1 Reaction@sparshall
My youngest sister has had MS for quite a few years, as well as pn. I was tested negative for MS, for which I'm grateful. I feel embarrassed for talking about my pain when I read and hear the stories of others who are suffering way more than I. I'm reminded of how fortunate I am and how generously God has provided for me.
Thank you for the explanation.
Jim
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2 Reactions@johnbishop, Sensory Neuropathy differs from Peripheral Neuropathy in the nerve root innervation and body parts effected. Hope someone can help me with a more specific explanation.
Flowers for my fellow chronic pain sufferers. May your day be filled with happiness and contentment.
Rachel
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2 Reactions@memomsloan This might help:
Center for Peripheral Neuopathy The University of Chicago
Quick Links About Us
Search
About Peripheral Neuropathy - Symptoms
What is Peripheral Neuropathy? | What Causes Peripheral Neuropathy? | Symptoms
3 TYPES OF PERIPHERAL NERVES
There are three types of peripheral nerves: motor, sensory and autonomic. Some neuropathies affect all three types of nerves, while others involve only one or two.
3 Types of Peripheral Nerves:
Motor
Sensory
Autonomic
Motor nerves send impulses from the brain and spinal cord to all of the muscles in the body. This permits people to do activities like walking, catching a baseball, or moving the fingers to pick something up. Motor nerve damage can lead to muscle weakness, difficulty walking or moving the arms, cramps, and spasms.
Sensory nerves send messages in the other direction—from the muscles back to the spinal cord and the brain. Special sensors in the skin and deep inside the body help people identify if an object is sharp, rough, or smooth, if it's hot or cold, or if a body part is still or in motion. Sensory nerve damage often results in tingling, numbness, pain, and extreme sensitivity to touch.
Autonomic nerves control involuntary or semi-voluntary functions, such as heart rate, blood pressure, digestion, and sweating. When the autonomic nerves are damaged, a person's heart may beat faster or slower. They may get dizzy when standing up, sweat excessively, or have difficulty sweating at all. In addition, autonomic nerve damage may result in difficulty swallowing, nausea, vomiting, diarrhea or constipation, problems with urination, abnormal pupil size, and sexual dysfunction.
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This page was last modified on 04.16.10 at 18:04 PM
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2 ReactionsJohn, thank you for acknowledging God for His blessings to you. I feel the same way, I have significant issues with my PN but have friends and family suffering from Parkinsons, MS and other disorders. I would not trade my issues with any of them. God bless you, John. Terry
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3 ReactionsSorry, I guess I should have posted reply to Jim rather than John. But I wish God's blessings on both of you, John and Jim!
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2 ReactionsI'm 82 and had those tests done about three months ago. I was somewhat fearful and nervous leading up to the actual tests, but found there was nothing to worry about. Somewhat uncomfortable, true, but it goes pretty quickly and nothing that's "unbearable." Just do it.
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