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.

runnergirl | @runnergirl | 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

@dwlowrance thank you for your input. Cheers to you.

REPLY
Erika | @erikas | 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

@runnergirl 13 years is a long time. Is autoimmune autonomic neuropathy a more generic diagnosis with less targeted treatments?

You will notice that I moved your question to a previous discussion related to this topic.

You'll notice that members like @avmcbellar @juanito have discussed autoimmune autonomic neuropathy here and may be able to offer information, suggestions, or support.

You may wish to scroll through previous posts and connect with members like @tigreyes2004 @bethunger @kelsey1234 @kenbahler2004 @sunnyflower @ncameron @fiesty76 that are active in the neuropathy group.
- Member Neuropathy Journey Stories: What's Yours? https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

May I ask what the difference is between Rituxan and CellCept?

REPLY
1 reply
runnergirl | @runnergirl | Mar 21, 2021
In reply to @erikas "@runnergirl 13 years is a long time. Is autoimmune autonomic neuropathy a more generic diagnosis with..." + (show)
@erikas

@runnergirl 13 years is a long time. Is autoimmune autonomic neuropathy a more generic diagnosis with less targeted treatments?

You will notice that I moved your question to a previous discussion related to this topic.

You'll notice that members like @avmcbellar @juanito have discussed autoimmune autonomic neuropathy here and may be able to offer information, suggestions, or support.

You may wish to scroll through previous posts and connect with members like @tigreyes2004 @bethunger @kelsey1234 @kenbahler2004 @sunnyflower @ncameron @fiesty76 that are active in the neuropathy group.
- Member Neuropathy Journey Stories: What's Yours? https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

May I ask what the difference is between Rituxan and CellCept?

Jump to this post

@erikas Thanks for responding to my post.

Autonomic neuropathy is not necessarily a generic diagnosis. It's just not as common as other causes as SFN. As for treatments, I'm working with my doctors on trying to find one.

Regarding the drugs, Rituxan targets the B cells and CellCept targets the T cells.

@juanito I'm so sorry to hear of all the challenges you've been dealing with. This disease is certainly emotionally distressing. May I ask where you read about the 5-10 year life expectancy after diagnosis?

Thanks again!

REPLY
ubikings | @ubikings | Feb 19, 2022
In reply to @mstephen "I was diagnoses with AN in 2014. No real treatment available from VA Docs. My Primary..." + (show)
@mstephen

I was diagnoses with AN in 2014. No real treatment available from VA Docs. My Primary says there is nothing new to treat or alleviate the disease It has become worse as I age. (71) I read from some of the reports that some sort of dementia is not uncommon. I experience that 24/7. Nothing more frustrating.. I saw an aunt start her decline in Alzheimer's many years ago. Cant help making that association. My type 2 went into remission after Bariatric surgery in 7/15 .. I was not diagnosed with type 2 until my 50th birthday. (98)/ The weight loss of 80 lbs has given me a reprieve but the tingling feels like low voltage current in parts of my body. That was noticed in late 70's..

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Please I will like to get in touch with you privately to enlighten me more on how to cope with AN, it is a new journey with countless challenges.

Kindly drop yours so that I can write you straight away, please.

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1 reply
ubikings | @ubikings | Feb 19, 2022
In reply to @ubikings "Please I will like to get in touch with you privately to enlighten me more on..." + (show)
@ubikings

Please I will like to get in touch with you privately to enlighten me more on how to cope with AN, it is a new journey with countless challenges.

Kindly drop yours so that I can write you straight away, please.

Jump to this post

Please I will like to get in touch with you privately to enlighten me more on how to cope with AN, it is a new journey with countless challenges. ** Can you send my your contact information in a private message?

Kindly drop yours so that I can write you straight away, please.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Feb 19, 2022
In reply to @ubikings "Please I will like to get in touch with you privately to enlighten me more on..." + (show)
@ubikings

Please I will like to get in touch with you privately to enlighten me more on how to cope with AN, it is a new journey with countless challenges. ** Can you send my your contact information in a private message?

Kindly drop yours so that I can write you straight away, please.

Jump to this post

@ubikings - We removed your personal email address from your message above. We recommend not posting personal contact information in the public forum. You can use the secure private message function to exchange contact information with @mstephen or another member.

To send a private message, click on the members username and then click the Send private message link at the bottom of their profile description.

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ndechape | @ndechape | Mar 10, 2022

I was diagnosed with post Covid POTS about 6 months ago. Is anyone familiar with this? I'm wondering if it is the same as regular POTS or if maybe it will go away with time like some people who have long covid reactions for a year or more

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jart | @jart | May 8, 2022

Autonomic Neuropathy is the condition of a loved one. He has diabetes T2. What can he do and what physician specialty should manage his care.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | May 8, 2022
In reply to @jart "Autonomic Neuropathy is the condition of a loved one. He has diabetes T2. What can he..." + (show)
@jart

Autonomic Neuropathy is the condition of a loved one. He has diabetes T2. What can he do and what physician specialty should manage his care.

Jump to this post

Welcome @jart. Type 2 diabetes is the most common cause of autonomic neuropathy. When poorly controlled, the diabetes increases the risk of autonomic neuropathy and other nerve damage.

Jart, you'll notice that I moved your message to this existing discussion about AN.
- Who else has Autonomic Neuropathy? https://connect.mayoclinic.org/discussion/autonomic-neuroapthy/

I did this so you can connect with other members like @runnergirl @juanito @sunnyflower and many others.

Typically people with AN are in the care of neurology. See more here: https://www.mayoclinic.org/diseases-conditions/autonomic-neuropathy/diagnosis-treatment/drc-20369836
Is your loved one able to control his diabetes? Is he currently in the care of a neurologist?

REPLY
2 replies
jart | @jart | May 8, 2022
In reply to @colleenyoung "Welcome @jart. Type 2 diabetes is the most common cause of autonomic neuropathy. When poorly controlled,..." + (show)
@colleenyoung

Welcome @jart. Type 2 diabetes is the most common cause of autonomic neuropathy. When poorly controlled, the diabetes increases the risk of autonomic neuropathy and other nerve damage.

Jart, you'll notice that I moved your message to this existing discussion about AN.
- Who else has Autonomic Neuropathy? https://connect.mayoclinic.org/discussion/autonomic-neuroapthy/

I did this so you can connect with other members like @runnergirl @juanito @sunnyflower and many others.

Typically people with AN are in the care of neurology. See more here: https://www.mayoclinic.org/diseases-conditions/autonomic-neuropathy/diagnosis-treatment/drc-20369836
Is your loved one able to control his diabetes? Is he currently in the care of a neurologist?

Jump to this post

Neurologist made the diagnosis. No, his BS is not well-controlled and until he becomes convinced he MUST do that, I guess there’s nothing much more that can be done. (He’s on max meds from Endocrinologist.). BUT, he’s got something else too so next is a hematologist. In testing they found protein issues in his blood. Something called MGUS as well as Kappa Lambda Free Chain irregularities. Not a good sign, I know. I imagine a bone marrow test is next. I “think” what they may be looking for is a possible MM diagnosis.

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