Our Mission: To help patients suffering from CIDP and immune neuropathies get information. To help research in finding the best treatment for these disorders
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CIDP or chronic inflammatory demyelinating polyneuropathy is an immune-mediated neuropathy that affects the
peripheral motor and sensory nerves. The symptoms are of a slowly progressive numbness and tingling that usually starts in the feet, but later spreads to the legs and hands. The patients also complain
of some weakness, again usually starting in the lower extremities, but soon involving the upper extremities. With further involvement of the sensory system, other modalities of sensations, such as
balance, are affected and the patients complain of inability to walk or maintain balance in the dark. There is usually no bowel or bladder involvement. On rare occasions, cranial nerves are involved
and their symptoms range from difficulty in swallowing to double vision and numbness involving the face. Cognitive skills are not affected by CIDP.
The diagnosis of CIDP is suspected with a history of progressive sensorimotor neuropathy. Physical examination consistent with distal sensory loss in the upper and lower extremities, in conjunction with
motor weakness that can be more proximal than distal supports the clinical diagnosis.
Patients may present with pain, numbness or weakness.
One of the the early signs is a patient has to use their hands to go upstairs or rise from the squatting position. Some have vasomotor symptoms like difficulty in maintaing their blood pressure, burning sensations which are misdiagnosed as Reflex Sympathetic Dystrophy. Even the Complex regional pain syndrome is more likely to be CIDP.Current standards do not recommend a nerve biopsy: As the skip lesions of CIDP may or may not be seen in Sural nerve biopsy. Further the biopsy will leave the patient with a permanent sensory deficit. Which may be worse the the original disease. Recently a Austrian team has developed a novel method where they stitch the stumps following a sural nerve biopsy. They report no sensory problems. Another new technique is doing a punch skin biopsy and still others are doing a muscle biopsy.
(Finding of inflammation on the nerve biopsy, although rare, definitely confirms the diagnosis. However, the absence of inflammation does not entirely rule it out. Findings of predominant demyelination on the nerve biopsy can be used in conjunction with the other studies and the clinical presentation to suggest a diagnosis of CIDP.) We do not recommend a nerve biopsy based upon some studies which show it did not help add much information.
There is no need to do expensive antibody tests like neuropathy panel. This is according to Dr Katz he states that its much better to use IVIg as a diagnostic test.
Once the diagnosis is secured, treatment with immunosuppressive medications can be initiated. The first line of treatment remains high-dose I.V.I.G that is infused intravenously slowly tapered over time depending on the patient's improved symptomatology. The most effective new agent is intravenous gamma globulin which has been shown in many studies to improve the symptoms of CIDP.
IVIG is also uses as a diagnostic test. If the physician is suspecting CIDP then they can elect to give IVIg and see if the patients symptoms improve. Usually it will take three to five cycles of IVIg to see a improvement.
The most important decision to make is who will be the provider of your IVIG. As IVIG can cause severe side effects if not administered properly. See our links page for a recommended IVIG provider.
Patients who carry a diagnosis of Post Polio syndrome may benefit from IVIg as they usually have CIDP, as has been shown in studies . Currently there are case reports that IVIg has even helped patients with C.M.T disease, lumbar and brachial neuritis, transverse Myelitis. Diabetic Amytrophy is considered to be a vasculitis and has been reported responsive to IVIg.
Autoimmune diseases have become the third biggest disease category in the United States. The treatment of all the autoimmune diseases is about the same. That is anti-inflammatory. IVIg remains the cornerstone of this treatment. So there have been more then 10 studies showing that the neuropathy in Sjogren's, lupus respond to IVIg. Lymes disease patients have also responded to IVIg. Chronic Lymes is a autoimmune phenomena not an infection.
Pain medication will not treat CIDP .Avicenna (Ibn Cenna), in his encyclopedia of medicine wrote that it is best for the patient that the cause of their disease be treated. Pain medication do not treat the cause nor do antidepressants rather they mask the symptoms. Why suffer the side effects of unnecessary medication. Any sick patient will be depressed, one needs to treat the disease not the effect. Once the disease gets better depression and pain may go away.
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