Conductive autonomic nerve damage

[vdub]

I'm not a doctor, but....

I think we all know that wegs affects our lungs and sinuses and I've heard of problems with neuroprathy of sensory nerves causing tingling, numbness, etc, but I haven't heard much about wegs affecting the autonomic nerves like breathing. I'm not sure I'm an example of such a thing, but since getting wegs I've had otherwise unexplained damage to my phrenic nerve which paralyzed my right diaphragm and now I have damage to my heart nerves and I'm getting a pacemaker in about 4 hrs.

Two doctors have said they suspect wegs has played a part in both conditions. Others have said no way. Anyway, I thought I'd put this out there and others can comment with their own experiences.

[Alias]

If you Google "Wegener's phrenic nerve", there are results suggesting that this does happen.

Sorry you are having such a rough ride lately.

[Debbie C]

I always say if something was gonna happen it was gonna happen to me , but you got me beat vdub. I am sorry you are having more problems. Was this something you have had for awhile or did you just find out since you are having these done in 4 hours ? Since this disease does constrict the blood flow is that was is going on ? I will have to google it ( I should have before I posted ) Anyway I will keep you in my prayers and hope the pacemaker solves the problem. Please keep us posted

[me2]

I have damage to my central nervous system. My cerebellum. But since MRI does not show vascular damage my Rhuemy is reluctant to attribute it to wg.
I hope the procedure goes smoothly and you recover quickly.

[vdub]

I'll be darned, Tom! I hadn't googled something quite that simply -- outstanding find! I have been trying to blame my phrenic nerve issue on an old surfing accident. I don't want to automatically blame everything on wegs and, besides, "surfing accident" sounds so cool... But, I'm beginning to think both these issues are wegs related. I really did like to say "surfing accident", too, it was so macho.... :-)

[mishb]

Sending lots of wishes vdub, for a pain free procedure.
I hope it gets things sorted.

I'm also sending you this extra bit of love, for future use

Bubble_Wrap.jpg

[vdub]

I'm sure the bubble wrap will come in handy, Michelle! :-)

I'll be getting out of hospital in a couple hours and heading home with my new pacemaker. I hope it gives some good results. Thanks for all the well wishes!

[Alias]

Yeah, I'd go with the surfing accident - makes a much better story! Hope you're home and resting comfortably over the holidays.

[Alysia]

I am glad you got your pacemaker, vdub.

The article that I attached in the other thread is a good one. I saw that one cant read it trough the link so I will try to copy it. See if it works for me... going to be a long one....

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This portion deleted [VW] -- This was a real tough call, Alysia. There might have been a copyright issue with the cut and paste, so I deleted it. I can't imagine a site coming after us, but you just never know. Thanks, vw

[drz]

I wonder how many Weg experts know much about peripheral neuropathy and its affects upon our nervous system. My Mayo expert did indicate a MRI would be next step for assessment if my symptoms get worse.

Added comments from another post [VW] -- yes,it can happen I have been assessed for this since I am considered at high risk due to having both diabetes and Weg.

: High blood glucose levels over a period of years may cause a condition called autonomic neuropathy. This is damage to the nerves that control the regulation of involuntary function. Examples are body functions such as blood pressure, heart rate, digestion, sexual activity and perspiration.

Definition

By Mayo Clinic Staff

Autonomic neuropathy occurs when the nerves that control involuntary bodily functions are damaged. This may affect blood pressure, temperature control, digestion, bladder function and even sexual function.
The nerve damage interferes with the messages sent between the brain and other organs and areas of the autonomic nervous system, such as the heart, blood vessels and sweat glands.

While diabetes is generally the most common cause of autonomic neuropathy, other health conditions — even an infection — may be to blame. Some medications also may cause nerve damage. Symptoms and treatment will vary based on which nerves are damaged.