Are there any support groups or any support available?
Filed Under: Health and Ill
Tags: acquired, Demyelating, Dystal, information, Neuropathy, Symetric
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Elizabeth S – I hope the following reference(s) will help. Spelling is a little different.
American Academy of Neurology
Distal acquired demyelinating symmetric neuropathy
J. S. Katz, MD, D. S. Saperstein, MD, G. Gronseth, MD, A. A. Amato, MD and R. J. Barohn, MD
From the Department of Neurology (Dr. Katz), Palo Alto VA Medical Center, CA; Stanford University (Dr. Katz), Palo Alto, CA; Wilford Hall Medical Center (Drs. Saperstein and Gronseth), San Antonio; the University of Texas (Drs. Saperstein and Barohn), Southwestern Medical Center, Dallas; and the University of Texas Medical Center (Dr. Amato), San Antonio, TX.
Address correspondence and reprint requests to Dr. Jonathan Katz, Department of Neurology (127), Department of Veterans Affairs, 3801 Miranda Avenue, Palo Alto, CA 94304.
OBJECTIVE: To characterize an acquired, symmetric, demyelinating neuropathic variant with distal sensory or sensorimotor features.
BACKGROUND: Classic chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) patients have prominent proximal and distal weakness. However, chronic demyelinating neuropathies may present with different phenotypes. An approach that distinguishes these disorders primarily according to the pattern of weakness may be useful to the clinician.
METHODS: A total of 53 patients with acquired symmetric demyelinating polyneuropathies were classified primarily according to the pattern of the neuropathy and secondarily according to the presence and type of monoclonal protein (M-protein) in this retrospective review. The authors distinguished between patients with distal sensory or sensorimotor involvement, designated as distal acquired demyelinating symmetric (DADS) neuropathy, from those with proximal and distal weakness, who were designated as CIDP.
RESULTS: M-proteins were present in 22% of patients with CIDP. There were no features that distinguished clearly between CIDP patients with or without an M-protein, and nearly all of these patients responded to immunomodulating therapy. In contrast, nearly two-thirds of the patients with DADS neuropathy had immunoglobulin M (IgM) kappa monoclonal gammopathies, and this specific combination predicted a poor response to immunomodulating therapy. Antimyelin-associated glycoprotein (anti-MAG) antibodies were present in 67% of these patients.
CONCLUSION: Distinguishing acquired demyelinating neuropathies by phenotype can often predict the presence of IgM kappa M-proteins, anti-MAG antibodies, and responses to immunomodulating therapy.
Neurological journals (as Norton mentioned) would be a good resource if you have a medical background and are able to understand the terminology and pathophysiology discussed. But if you don’t have a medical background, there is very little information out there for the layperson. One resource that is used constantly by Physicians et al, is UpToDate.com. It has information for patients and information for medical staff. First of all, I just wanted to spell it correctly for you, because otherwise you’ll have an extremely difficult time finding information… Distal Acquired Demyelinating Symmetric Neuropathy.
The word distal is a point of reference to where the pathology is located… presumably away from your centerline, in a distal grouping of nerves, perhaps in one of your extremities (arms, hands, legs, feet, something like that). Acquired– self explanatory. So I would imagine a good starting point would be to look up Demyelinating Symmetric Neuropathy.
This resource (uptodate.com) is a Physician-trusted resource, without the academic terminology of neurological journals. It’s only a starting point, though. Ask a physician to print you off some basic data on the disorder, and I’m sure they will gladly do so!
Good luck, I hope that helps!