1. < Neuropathy

Who else has Autonomic Neuropathy?

Posted by mstephen @mstephen, Mar 25, 2018

The Mayo Clinic in Phoenix diagnosed me with Autonomic Neuropathy in 2014. I don't see any reference to that form in any of the information or discussions. I know it effect's my balance, body temperature variance and possibly thinking. Any one have this diagnosis? Seems to be worsening as I age.

Interested in more discussions like this? Go to the Neuropathy Support Group.

juanito | @juanito | Jan 18, 2021
In reply to @juanito "I'VE BEEN DIAGNOSED WITH ONE OF THE THREE TYPES OF PERIPHERAL NEUROPATHY, NAMELY, AUTONOMIC. I'VE READ..." + (show)
@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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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.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jan 19, 2021
In reply to @juanito "Thanks for your response John. I'm eager to read the Mayo Clinic info. No, my neurologist..." + (show)
@juanito

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.

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@juanito I can understand your concern due to the ever increasing shortness of breath. I'm 77 and I would also be concerned. From what I've read shortness of breath is an indication of some underlying cause or condition. There is also another Mayo Clinic article that you may find helpful listing symptoms for shortness of breath and links to the different conditions that can cause shortness of breath - https://www.mayoclinic.org/symptoms/shortness-of-breath/basics/causes/sym-20050890

Does the shortness of breath occur at any particular time of day or an activity?

REPLY
1 reply
avmcbellar | @avmcbellar | Jan 19, 2021
In reply to @juanito "I'VE BEEN DIAGNOSED WITH ONE OF THE THREE TYPES OF PERIPHERAL NEUROPATHY, NAMELY, AUTONOMIC. I'VE READ..." + (show)
@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?

Jump to this post

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

REPLY
1 reply
juanito | @juanito | Jan 19, 2021
In reply to @johnbishop "@juanito I can understand your concern due to the ever increasing shortness of breath. I'm 77..." + (show)
@johnbishop

@juanito I can understand your concern due to the ever increasing shortness of breath. I'm 77 and I would also be concerned. From what I've read shortness of breath is an indication of some underlying cause or condition. There is also another Mayo Clinic article that you may find helpful listing symptoms for shortness of breath and links to the different conditions that can cause shortness of breath - https://www.mayoclinic.org/symptoms/shortness-of-breath/basics/causes/sym-20050890

Does the shortness of breath occur at any particular time of day or an activity?

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I go to bed around 10pm and all is well. Then, I wake up around 3am almost unable to breath. I then get up at 3am, and am breathing better by 7am. It's been the same for almost a year.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jan 19, 2021
In reply to @juanito "I go to bed around 10pm and all is well. Then, I wake up around 3am..." + (show)
@juanito

I go to bed around 10pm and all is well. Then, I wake up around 3am almost unable to breath. I then get up at 3am, and am breathing better by 7am. It's been the same for almost a year.

Jump to this post

@juanito - I have sleep apnea and use a CPAP at night. Sleep apnea can be one of the causes for the symptoms you are describing. Here is some information that you may find helpful.

Why Do I Have Shortness of Breath at Night?: https://www.healthline.com/health/sleep/shortness-of-breath-at-night

Have you ever been tested for sleep apnea? Usually the test is an overnight stay at the hospital for the sleep study and you are hooked up to a bunch of sensors and wear a CPAP mask.

Polysomnography (sleep study): https://www.mayoclinic.org/tests-procedures/polysomnography/about/pac-20394877

REPLY
1 reply
juanito | @juanito | Jan 19, 2021
In reply to @avmcbellar "Hi! @juanito may I also add, if you have a concern with your oxygen level you..." + (show)
@avmcbellar

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

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Thanks for your comments. I do use an oximeter. Ironically, my reading is always 98%, so my physician cannot prescribe oxygen. I've always wondered why my oxygen level is 98% when I hardly can breath!

REPLY
juanito | @juanito | Jan 19, 2021
In reply to @johnbishop "@juanito - I have sleep apnea and use a CPAP at night. Sleep apnea can be..." + (show)
@johnbishop

@juanito - I have sleep apnea and use a CPAP at night. Sleep apnea can be one of the causes for the symptoms you are describing. Here is some information that you may find helpful.

Why Do I Have Shortness of Breath at Night?: https://www.healthline.com/health/sleep/shortness-of-breath-at-night

Have you ever been tested for sleep apnea? Usually the test is an overnight stay at the hospital for the sleep study and you are hooked up to a bunch of sensors and wear a CPAP mask.

Polysomnography (sleep study): https://www.mayoclinic.org/tests-procedures/polysomnography/about/pac-20394877

Jump to this post

I have had three sleep apnea tests - 2 in the lab, and 1 at home. However, I've never been able to sleep long enough to get a diagnosis.

REPLY
avmcbellar | @avmcbellar | Jan 20, 2021
In reply to @juanito "I'VE BEEN DIAGNOSED WITH ONE OF THE THREE TYPES OF PERIPHERAL NEUROPATHY, NAMELY, AUTONOMIC. I'VE READ..." + (show)
@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?

Jump to this post

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

REPLY
runnergirl | @runnergirl | Mar 20, 2021
In reply to @juanito "I'VE BEEN DIAGNOSED WITH ONE OF THE THREE TYPES OF PERIPHERAL NEUROPATHY, NAMELY, AUTONOMIC. I'VE READ..." + (show)
@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?

Jump to this post

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!

REPLY
3 replies
dwlowrance | @dwlowrance | Mar 20, 2021
In reply to @runnergirl "Hi All, Thirteen years of symptoms and ten neurologist later I finally received a diagnosis of..." + (show)
@runnergirl

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!

Jump to this post

Thanks for the posting. Your diligence over the years paid off. Congratulations. I work on immune system health daily with a Mediteranean diet and lots on Vitamin E, garlic and olive oil. I hope you find a solution with prescriptions that works for you. Have a great day.

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