autonomic neuropathy

[flowerfloosey]

Have just been diagnosed as having possible autonomic neuropathy. I am looking to talk to anyone else that has this condition. Thank you for your posts.
Cynde

[joy]

Hi Cynde

You might get more replys if you go to the peripheral neuropathy forum. I have that myself and I believe there are some there that have the autonomic type.

[Cry Tears]

How do they diagnose this horrid disease?
I'm having an awful time with PN right now as its spread all over my body within just a few weeks.
Right now its on my face where its burning something horrid.
Its all over my body, extremities, trunk and even my eyes burn around the edges(not the eyeballs...just the eyelids.
I had 2 EMG and NC test. One was done in June showing I had moderate PN sock glove pattern. My B12 level was 232:eek: well duh!
In October, after faithfully taking daily regement of sublingual B12, thanks to BT and info on B12, my PN, muscle weakness and sucking fatigue was almost just a faint nightmare past memory....My EMG and NC test were "normal" and my PN burning was very, very slight burn on bottoms of my feet on the bad days.
Then a few weeks ago I had an "episode" of having a stroke like ordeal.
Thats when my PN began traveling over my entire body.
I'm finally throwing in the towel and am going to start taking the Lyrca to see if this helps the burning. Pain meds barely touch this.
The muscle weakness is scarying me....at the rate I'm going we'll be forced to sell our home (Its 3 levels, stairs everywhere...thought it was cool way back when...now its just awful and I fear falling)
If you have any suggestions or input I'm all ears!
My insurance mandates I see those listed...I've seen several Neuro's who were dimisive and down right rude when my PN first began. The EMG and NC told them the real story, but I didn't want to return to see them after such nasty treatment.
I have Crohns disease, had 2 sections of small intestines removed. They had to leave several feet of diseased intestines in hope it would heal.
Now I have a partial bowel obstruction from the scar tissue....a constriction the size of a pencil. Anytime I eat a lot of fiber or peelings it gets stuck at that point...then only way out is back up...horrible ordeal! I've spent numerous hours in the ER vomiting poop! Talk about gross!
Thanks, cheryl

[Cry Tears]

She feels this is the cause of my vomiting a lot.
She wants me to go to Mayo Clinic again because I've struck out too many times with rotten neuros who are on my list of providers.
It probably be cheaper if I just went down there, get it all done in one clinic and not be treated with dismissive neuros like I've been when my PN was all time high...told me just take neurontin! Never offered or suggested B12.
I wont' go there....just glad I found BT before I died!
Blessings, cheryl

[joy]

oh yes, cheryl, i forgot to address this part in our conversation before. don't count on mayo clinic. as soon as they found out i depended on opiods for pain, they wanted me to come back at a later time for weeks of therapy.


the neuro did not even make another session available to me until i demanded one. i thought that was terrible. but she knew i was not going back to all the awful anti-seziures i was on and had nothing else to offer me. none of their tests showed anything either. if you have the time and money especially insurance, GO FOR IT. really, i had to too. just in the 1 in a 10000 chance they'd find the cause. but they found my neurologist had done a good job. they did do a test for amyloid that had not been done.


i just couldn't make another trip and wasn't at all sure i could live without pills that had made the pain leave my body. maybe you will get a better doctor or whatever, or your circumstances will be different. it just put the nail in the coffin for me, more or less. i basicall went back home to the prinmary care doctor that had tried to TALK ME OUT of going and dismissed my neuro. and now i take each new thing as it crops up. which it is. there may be some success stories but not enough for me.