Mayo Clinic Connect
Anyone here dealing with peripheral neuropathy?
Liked by John, Volunteer Mentor, peggyj4411, jazzy27, heather074 ... see all
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.
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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.
Liked by John, Volunteer Mentor, Jim, Volunteer Mentor
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.
Liked by John, Volunteer Mentor, rwinney
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.
Liked by John, Volunteer Mentor
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.
Liked by John, Volunteer Mentor, phoenix0509
@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.
Liked by Lisa Lucier, Chris Trout, Volunteer Mentor
@memomsloan This might help:
Center for Peripheral Neuopathy The University of Chicago
Quick Links About Us
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 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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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
Liked by John, Volunteer Mentor, Jim, Volunteer Mentor, rwinney
Sorry, 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!
About 10 years ago, I began feeling “funny” sensations in my feet. I
notified my dr. who used a small instrument to poke at toes/feet asking
“can you feel that?” Yup, I could feel it so he said it was probably okay.
It continued. Five years later, I developed cancer and underwent chemo for
6 months and some radiation. Now, I have a full-blown case of neuropathy
that extends from feet up to ankles but it is a different than the *lack of
feeling* type – I feel everything. I can’t stand on my bathmat because it
hurts – how odd is that? Feet and ankles feel as though they are tightly
bound much as if you’d wrapped duct tape tightly around feet and ankles
many times. If my feet become too warm, they itch and there are frequent
jabs of severe pain. Ankles swell by bedtime. So, before I go to bed at
night, I stand on the cold garage floor for a few minutes to be sure the
feet are cold enough to allow me to get some sleep. I take no pain meds
(other than acetomenaphin) but take warfarin for a blood clot. I’m 80
years old and have heard horror stories about the testing that is done to
determine extent of nerve damage and am not in a mood to experience further
discomfort unless something really can be accomplished. So far, the best
therapy I’ve found is to keep your feet cool and apply a good foot cream
both AM and PM. Just a note
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.
Liked by iceblue
Hi @roq, welcome to Mayo Clinic Connect. Thank you for sharing your experience with the tests. Did the tests confirm a diagnosis?
Well, I have all three types. I have a spinal cord injury at T 7. I am paralyzed from my waist down. I had five years of intensive therapy and can “walk” a short distance in a walker, but after that, I fall a lot. I have a spinal cord stimulator for pain but it only helps a little bit. I use gabapentin 600 mg every six hours and tizanidine for spasms. I have neuropathy 24/7 and when it gets too bad, I put ice packs on my legs and hips to get some relief. My life totally changed when I became paralyzed with a spinal cord stroke. I never gave up and learned to drive our big suv with hand controls. I can take care of myself at home, but I really miss walking around the house. I am confined to my wheelchair because I fall too much.
Liked by John, Volunteer Mentor, Chris Trout, Volunteer Mentor, rwinney
Hi @darlingtondoll, I have a friend that is a Vietnam Vet and has a back injury that keeps him from walking much. He has a wheelchair with tracks that lets him go on any terrain. He takes it when he goes hunting or if he and his wife go out for a hike. Not sure what they cost but it has given him some freedom and outdoors enjoyment. Several companies make them now. Here are a couple of examples.
Liked by rwinney
That device looks fabulous. I have a special golf cart that is made in Texas and permits me to play again. I played before I was paralyzed for 40 years. Now I have to learn how to play again while strapped into this cart.
You GO girl! Impressive.
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