My husband has heriditary Peripheral Neuropathy. His condition is severe and he has deteriorated rapidly over the last 10 years to the point that he is 6ft, 110 lbs and was just diagnosed with the early stages of respirtory failure due to the weakening of the breathing muscles. We were given a choice of comfort care or trying a ventilator. The pulmonologist also suggested that in time the Neuropathy would likely affect his ability to swallow which would necessitate a feeding tube and would affect his bladder muscles (if it hasn't already) which would require a permenant catheter. While we don't hold much hope for the overall situation and expect it will just get worse and ultimatley take his life, we are hoping to find a Doctor or maybe a support group who has had other patients with Neuropathy this severe who have been diagnosed with respitory failure. Our hope is to get a better understanding of what we are facing. Any information or references you could provide would be appreciated.
I'm very sorry to hear about your husband's condition. It's extremely important that the right diagnosis has been made for your husband as there are some treatments available for certain types of neuromuscular diseases, especially given his rapid decline. Peripheral neuropathy is a very general term that characterizes many types of diseases. Is it a myopathy, charcot marie tooth variant, myotonic disorder, etc? Has anyone been able to put a name on it??? If you are in the Cleveland area, Dr. Kerry Levin and Dr. Bob Shields are outstanding neuromuscular specialists who will be happy to help you. If you are not, then go to a major academic or clinical center near you with a strong neuromuscular program.
For more specific info, I in turn will need more specific info regarding his clinical histroy and diagnosis. As your husband appears to be deteriorating, I will try and get back to you if you can provide more info as a comment to this particular string. Good luck.
you may also wish to try www.braintalk.org. go to specific subjects, Peripheral Neuropathy or any of the other subjects listed there. Good luck to you. I have Vasculitic Neuropathy, Neuropathy caused by Vasculitis, possibly CIDP, spinal stenosis and Tarsal Tunnel Syndrome so I can sympathize with you. DENNIS
Thank you very much for everyone who responded. My husband has gone to see a specialist at the Hospital of the University of Pennsylvania once every couple of years, Dr. Authur Asbury. He explained that my husband has a rare heredity form of neuropathy. Unfortunately (or not) my husband has not had much testing done as the doctors have indicated to him that even with tests to further drill down on the problem, there probably isn't much they would be able to do for him, so he usually declines to have anything done. With this recent breathing issue, he was admitted to the hospital today and is going to have all kinds of tests done and we were able to get him scheduled to see a specialist at John Hopkins. It may be too late to do anything, but hopefully we'll at least get an understanding of what we are in for. Thanks again to everyone who replied. There is a lot of good information on the support sites and it is comforting in a way to know there are others in the same or similar position as we are.
I have CMT type 2-C with some bulbar palsy symptoms. (Rare). I have breathing problems, swollowing problems. A great site for "Up To Date" CMT information, if http://www.cmtnews.com also consider joining a CMT Discussion/Support group for those with or having family members with CMT. Over 250 members. Some use CPAP or BIPAP for breathing.
To Learn About The Most Common Of Hereditary Neuromuscular Diseases, Hereditary Motor Sensory Neuropathy or More Commonly Known as, Charcot-Marie-Tooth, Go To: http://www.yahoogroups.com/group/CMT-Support
To Learn What This Disease Can Do To a Person Who Has It, Go To: http://www.cmtnews.com
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