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Neurology (Expert Forum)
Re: idiopathic peripheral neuropathy
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Re: idiopathic peripheral neuropathy
by CF-NEURO-MD, Jan 01, 1995 12:00AM
Posted By CCF NEURO MD on May 05, 1997 at 14:02:34:
In Reply to: idiopathic peripheral neuropathy posted by Marjorie Kravitz on April 25, 1997 at 10:31:04:
: My condition has been described as sensory idiopathic neuropathy or polyneuropathy. I am not a diabetic, nor do I have any apparent cause for the painful burning feet that sent me to a series of podiatrists, orthopedists, and neurologists. I am now taking 50 mg/day desipramine and .5 mg of clonazepam 3/day. From web searches and various doctors' suggestions, I also take magnesium, Vit.E, Evening Primrose Oil, and Lipoic Acid. Do any of these nonprescriptive supplements hold any promise for repairing nerve damage or preventing further damage? From what I've read, clinical trials show that drugs with nerve growth factor show great promise for diabetics with PN. When will patients with idiopathic PN be able to benefit from these drugs? What is the significance of the numbness I feel in the lower legs when I walk at a brisk pace? Is there any hope/probability that I will ever be able to resume my daily half-hour walks (at a brisk 4 mph), visits to craft shows and museums, touring and traveling?
Thank you in advance for addressing this complex series of questions for what has been described as one of the most frustrating conditions to treat.
(I submitted a similar message today but didn't see it posted so have tried once more)
Idiopathic sensory neuropathy refers to damage to the peripheral nerves which supply feeling to the body, for which a cause cannot be found. The symptoms consist of numbness, tingling, burning, itching or other odd sensations. There may be associated imbalance in walking due to the lack of sensory feedback. It can be quite painful, particularly at night. There are a number of medications used to treat the pain including tricyclic antidepressants(such as desipramine, amitriptyline, noretriptyline), tegretol, mexilitine, Neurontin and zostrix cream which all can have variable success. Doses should be maximized before giving up on the treatment. Eventually, as the peripheral neuropathy progresses and additional sensation is lost, the pain should hopefully subside. Unfortunately, these neuropathies are gradually progressive, unless a cause can be identified. The additional nonprescriptive agents have been suggestive to have some benefit based upon their antioxidant effect. If you have not seen a significant benefit from these agents, you may want to taper the list due to their expense. There is unlikely to be any harmful effect from them with the exception of Vitamin B6 which I do not recommend taking due to the fact that it may also induce a peripheral neuropathy. Nerve growth factors are under study at the present time, mainly for diabetic peripheral neuropathy which causes damage to small sensory fibers. There may be some benefit in the future for sensory neuropathies if they affect the small fibers. Watch for upcoming news on this treatment.
The numbness in your legs when walking can represent a variety of things. Most likely it is due to your neuropathy which you may have skin hypersensitivity, which walking may increase. Other possibilities include arterial vessel/vascular disease in the lower extremities or due to arthritic changes in the low back. If you have not mentioned this to your local physician, I would do so. Whether or not you return to your usual activities depends on how much pain control you can achieve and how the sensory loss affects your balance when walking. I would encourage you to try to remain as active as possible. I hope this information is helpful. Here is a reference where you may also get more information.
National network. Founded 1994. Self-help group for people with peripheral neuropathy
(damaged nerves in the peripheral nervous system connecting the brain and spinal cord, such as
with diabetes, injuries or traumas, etc). Newsletter ($12). Phone support, pen pals, information
and referrals. For information, send self-addressed stamped envelope. Assistance in starting
groups. Write: Peripheral Neuropathy, 19579 Temescal Canyon Rd., Suite 1002, Corona, CA
91719. Call Linda at (909)687-3026; FAX: (909)735-7870 or Lu at (909)272-5877.
- Peripheral Nerve Disease mononeuritis multiplex mononeuropathy
- polyneuropathy
In Reply to: idiopathic peripheral neuropathy posted by Marjorie Kravitz on April 25, 1997 at 10:31:04:
: My condition has been described as sensory idiopathic neuropathy or polyneuropathy. I am not a diabetic, nor do I have any apparent cause for the painful burning feet that sent me to a series of podiatrists, orthopedists, and neurologists. I am now taking 50 mg/day desipramine and .5 mg of clonazepam 3/day. From web searches and various doctors' suggestions, I also take magnesium, Vit.E, Evening Primrose Oil, and Lipoic Acid. Do any of these nonprescriptive supplements hold any promise for repairing nerve damage or preventing further damage? From what I've read, clinical trials show that drugs with nerve growth factor show great promise for diabetics with PN. When will patients with idiopathic PN be able to benefit from these drugs? What is the significance of the numbness I feel in the lower legs when I walk at a brisk pace? Is there any hope/probability that I will ever be able to resume my daily half-hour walks (at a brisk 4 mph), visits to craft shows and museums, touring and traveling?
Thank you in advance for addressing this complex series of questions for what has been described as one of the most frustrating conditions to treat.
(I submitted a similar message today but didn't see it posted so have tried once more)
Idiopathic sensory neuropathy refers to damage to the peripheral nerves which supply feeling to the body, for which a cause cannot be found. The symptoms consist of numbness, tingling, burning, itching or other odd sensations. There may be associated imbalance in walking due to the lack of sensory feedback. It can be quite painful, particularly at night. There are a number of medications used to treat the pain including tricyclic antidepressants(such as desipramine, amitriptyline, noretriptyline), tegretol, mexilitine, Neurontin and zostrix cream which all can have variable success. Doses should be maximized before giving up on the treatment. Eventually, as the peripheral neuropathy progresses and additional sensation is lost, the pain should hopefully subside. Unfortunately, these neuropathies are gradually progressive, unless a cause can be identified. The additional nonprescriptive agents have been suggestive to have some benefit based upon their antioxidant effect. If you have not seen a significant benefit from these agents, you may want to taper the list due to their expense. There is unlikely to be any harmful effect from them with the exception of Vitamin B6 which I do not recommend taking due to the fact that it may also induce a peripheral neuropathy. Nerve growth factors are under study at the present time, mainly for diabetic peripheral neuropathy which causes damage to small sensory fibers. There may be some benefit in the future for sensory neuropathies if they affect the small fibers. Watch for upcoming news on this treatment.
The numbness in your legs when walking can represent a variety of things. Most likely it is due to your neuropathy which you may have skin hypersensitivity, which walking may increase. Other possibilities include arterial vessel/vascular disease in the lower extremities or due to arthritic changes in the low back. If you have not mentioned this to your local physician, I would do so. Whether or not you return to your usual activities depends on how much pain control you can achieve and how the sensory loss affects your balance when walking. I would encourage you to try to remain as active as possible. I hope this information is helpful. Here is a reference where you may also get more information.
National network. Founded 1994. Self-help group for people with peripheral neuropathy
(damaged nerves in the peripheral nervous system connecting the brain and spinal cord, such as
with diabetes, injuries or traumas, etc). Newsletter ($12). Phone support, pen pals, information
and referrals. For information, send self-addressed stamped envelope. Assistance in starting
groups. Write: Peripheral Neuropathy, 19579 Temescal Canyon Rd., Suite 1002, Corona, CA
91719. Call Linda at (909)687-3026; FAX: (909)735-7870 or Lu at (909)272-5877.
- Peripheral Nerve Disease mononeuritis multiplex mononeuropathy
- polyneuropathy
Member Comments
by mattkt, Jul 18, 2009 01:38AM
A related discussion, idiopathic peripheral neuropathy was started.
