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Who else has Autonomic Neuropathy?

Neuropathy | Last Active: Jun 10 2:46pm | Replies (121)

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@juanito

I'VE BEEN DIAGNOSED WITH ONE OF THE THREE TYPES OF PERIPHERAL NEUROPATHY, NAMELY, AUTONOMIC. I'VE READ THAT PEOPLE WITH THIS CONDITION USUALLY HAVE A LIFE EXPECTANCY OF ONLY ABOUT 5 TO 1O YEARS FROM THEIR DIAGNOSIS. BUT, THE DIAGNOSIS BASICALLY SEEMS TO BE BASED ON SYMPTOMS. IS ANYONE FAMILIAR WITH TREATMENT, IF ANY, FOR THIS CONDITION?

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Replies to "I'VE BEEN DIAGNOSED WITH ONE OF THE THREE TYPES OF PERIPHERAL NEUROPATHY, NAMELY, AUTONOMIC. I'VE READ..."

@juanito, Mayo Clinic has some information that provides some insight into the treatment of autonomic neuropathy on the page below. It mentions treating the underlying disease and managing the symptoms.

Autonomic neuropathy - Diagnosis & treatment: https://www.mayoclinic.org/diseases-conditions/autonomic-neuropathy/diagnosis-treatment/drc-20369836

Did your doctor or neurologist give you a specific diagnosis or any underlying cause?

Thanks for your response John. I'm eager to read the Mayo Clinic info. No, my neurologist made the diagnosis based on my symptoms. Nor did she give me any underlying causes. My problem is that, at age 85, I have a number of physical conditions that have some similar symptoms. My main concern is the ever increasing shortness of breath.

Hi! @juanito may I also add, if you have a concern with your oxygen level you may use a pulse oximeter to monitor the percentage of oxygen in your body. Normal is about 95%. A pulse oximeter can be purchased for around $50. Prices vary. Also your doctor may order a 24 hr test to determine if supplemental oxygen is needed. Usually, oxygen levels in the 80s may be the reason for confusion. You will need a strong diagnosis to support the test and supplemental oxygen for coverage by your health insurance. I have neuropathy and do notice a shortage of breath because I have a sensitivity to heat. Taking deep long breaths more often helps me to cool down to be more comfortable. I do not have a respiratory deficit. I did use the pulse-ox meter. My oxygen levels were 95% or above. Wish you well. Toni

Hi @juanito, sorry to hear of all your troubles. Did your neurologist order the sleep apnea tests? Were the findings not enough to warrant oxygen or a c-pap machine? If you are concerned perhaps see a pulmonary physician. The physician specializes in diseases of the lungs. He or she may offer a diagnosis for you and tell you if oxygen or a c-pap machine is indicated. Finding answers will put your mind at ease(and maybe more sleep too). A c-pap machine pushes air into your lungs. John @johnbishop may offer information as to which physician he went to for the order to get the test and determine his sleep apnea. Good luck. Hope you find the help you need. Toni

Hi All,
Thirteen years of symptoms and ten neurologist later I finally received a diagnosis of autoimmune autonomic neuropathy. Does anyone else out there have this same diagnosis?

I received one round of Rituxan infusions with the goal of "resetting" my immune system. I felt a little better but the symptoms returned. Because I have no B cells they don't want to give me another infusion. They are talking about a low dose of T cell modulators, such as Imuran or CellCept. Anyone have experience with either of those drugs? I can only think of the worst scenarios, but maybe low dose would be successful without too many side effects?

Thanks for any input!