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]

:wtf: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

2542

[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....

~~~~~~~~~~~~~~~

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 (http://www.mayoclinic.org/about-this-site/welcome)

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.

[Jaha]

Vdub,
I hope you are doing well after getting your pace maker.Please take care of yourself and rest as much as possible. I just wanted to mention to you to check out articles on Small Fiber Neuropathy. I was dx'd with it last
year and it can only be found by having a biopsy from three places on your leg. This type of neuropathy can cause autonomic damage to nerves going to the heart. I have a lot of fluctuation of pulse and blood pressure. I also have chest pain for unknown reasons. It has also effected my nerves to my stomach. They don't do these kind of biopsies at all facilities, it has to be read by specialized labs. I had mine done at Cleveland Clinic and it took about three weeks to get the results. I am wishing All the best in finding out what caused this to happen to you.

[vdub]

Thanks, Jana! I'll check that out. I have a PCP apt in about a week and I'll ask him about it.

Update: I read several articles on SFN, but I don't think I fit the metric. I'm happy about that since it looks like a nasty disease to have. I didn't notice a specific cure. Not to get too far off-track on this thread, but is SFN and AI disease?

[mishb]

Gosh vdub, fancy having a nasty disease that has no cure. Who would ever want one of those :tongue1:

Sorry, couldn't resist.

You just take everything in your stride. I'm glad you feel that you don't fit the picture for SFN

[vdub]

Gosh vdub, fancy having a nasty disease that has no cure. Who would ever want one of those :tongue1:
HA! You brightened my day just when I needed it most. Very good! :-)

[Debbie C]

Hey "macho man"...looking back on the thread I would stick with the surfing accident also and don't forget to mention you were surrounded by sharks :). Hope you are doing better

[vdub]

HA! Yes! :-)

[Jaha]

SFN can have many causes, most of the time they are just guessing as to the cause. It can be caused by AI's and there really is no cure and various unproven treatments. I hope you are doing well.

[vdub]

I'm doing good. The pacer pocket seems to be healing nicely (at least its beginning to itch, so that's a good indicator). I have had some improvement with my oxygen level and its certainly nice to not have my heart rate drop to 35bpm and then pause for 5 seconds at a time.

But, the pacer hasn't been a holy grail cure all that we all dream of getting. I don't get dizzy or light-headed as much when I first stand up now, but there's still issues with shortness of breath. But you can only expect so much when you only have 58% of your lungs to work with.

But, I'm still well enough to work on my old MG's and maybe run a chainsaw occasionally to get some firewood at the cabin, so all is good.