[Adastra]

For the past two to three months I have been really suffering with the pains and the burning in my feet. At the same time I have been having a lot of difficulties with my bowels. I have therefore been suspicious that after 15 years of sensory PN in my feet and more recently lower legs, together with frequent vicious cramps in both ankles, legs and hands, my PN has developed an autoimmune aspect.

As a result of the above, I went to see my consultant who has been treating me for some time with suspected irritable bowel syndrome. He last did a colonoscopy 2 years ago but could not see the full length of my colon as it is so long. I therefore had a barium enema which showed nothing sinister. He now proposes to do another colonoscopy (with a longer instrument) as he feels sure my bowel changes reflect autoimmune neuropathy. I am to have this on 4th October.

Can any of the experts or anyone who has had a similar problem give me any advice and what could the eventual outcome for this scenario be assuming it does now have an autoimmune feature? I really am feeling very low with all this pain and now this further development.

Many thanks in anticipation.

Tony

[Silverlady]

Tony,
First of all, I am so sorry you are suffering like this. Having dealt with bowel issues for many years due to Irritable Bowel Syndrome and now more recently with the Pelvic Floor Dysfunction, I can relate to you and understand your pain.

Just knowing you have the IBS, I am wondering if you have been properly tested for Gluten Sensitivity? Have you gone over the gluten file here? Gluten sensitivity can cause neuropathy in some people.

A lot of people suffer with this problem and don't know it.

Billye

[Adastra]

Hi Billye

Yes I have been tested for gluten sensitivity with negative results.
Many thanks for your thoughts.

BTW have you any idea how I change the spelling in my thread title? I have done an edit but it has no effect on the title. It should of course have been autoimmune not autonomic.

I do hope you are feeling a bit better for as you know I have been more than a little concerned about you and your numerous problems.

Tony

[nide44]

Tony,
Sorry I can't help with the AI problem, but can inform that the title of a thread is considered to be sacrosanct, just like the inability to delete an entire thread. The first post and the title are stuck. Can't delete.
You can edit the body of the post, but can't get rid of it entirely.
The title is only able to be modified by a mod.

[mrsD]

so please be patient with me.... Are you having constipation? or diarrhea? or
both alternately?

[Adastra]

Constipation has been my main problem until recently when the reverse has become more the order of the day.

The worst aspect is the lack of feeling in my bowels which my doc feels must be due to the neuropathy turning autoimmune. This makes visiting the small room a tiresome exercise. In other words peristalsis is absent.

Tony

[glenntaj]

--many people with predominantly small-fiber syndromes do report that they have autonomic symptoms of some sort from time to time, even though for many these are minor or "sublcinical", and they tend to affect the blood pressure and sweat systems more often than the gastric tract. This makes sense in that the autonomic nerves are predominantly of the small-fiber, unmyelinated sort, and molecular mimicry process autoimmune reactions may attack the polypeptides that these nerves may share with an individual's small-fiber sensory axons.

Autonomic disruption is also very common in diabetes, which is sort of the "model" for small-fiber syndromes.

Take a look at:

http://www.neuro.wustl.edu/neuromusc...tml#idiopathic

http://www.neuro.wustl.edu/neuromusc....htm#autonomic

http://www.neuro.wustl.edu/neuromuscular/autonomic.html

[BEGLET]

Hi Tony,

Sorry to hear about further problems... yes, neuropathy can affect your bowels - doesnt have to be auto-immune - but PN can damage the nerves that affect the motility of your stomach and/or intestines and colon... Good idea to have a colonoscopy to rule out any other stuff - but "motility" issues caused by neuropathy typically dont show in an endoscopy (for stomach) or colonoscopy - so if that comes up clean - I'd try to find a good GI motility specialist (they are a challenge to find).... there are meds that can help.. hang in there

[mrsD]

affects almost everyone who uses narcotics for pain. It just can't be avoided.

And if you are finding problems "controlling" impulses, the major cause of this in the elderly is spinal stenosis... called cauda equina syndrome.
It needs aggressive identification, so that damage is not permanent.

Sometimes people latch onto a diagnosis to explain new symptoms, when in fact something new is happening. I hope this is not true for you.

I am sorry you have this new problem. As we age, I am becoming very
aware of how the simple things in life we take for granted! Thanking God each day that you have normal bathroom visits, is not something young folks even think of.

some links:
http://orthoinfo.aaos.org/fact/thr_r...85&topcategory

http://www.emedicinehealth.com/cauda...article_em.htm

[dahlek]

At my own ownset of 'everything' I was NOT on pain pills and was stopped up better than a drain that'd had concrete poured down it? At that time...But. it took three weeks of Colace and lots of liquids to get things well,...rolling again?
Pain meds block things up - it's in the prescribing information...often clearly, at times not. But, it IS there...at the same time...
IF you are taking supplements, especially calciums AND magnesium? Well that can cause the true and faithful OPPOSITE effect! There are lots of other meds and supplements that can cause or augment the 'conundrum'...Add the 'stress' factor of what all we have to deal with into the 'mix'? and what have you got? Some problems...Save the frights for after that test next week...That is gonna be the potential for a lot of 'lets' look further's' or No problems can be seen...I surely hope for the latter!
For the interim? If it were me, I'd eat or try to, lots of fruits and fibres [if diabetic, this becomes a squirelley issue] Stick to what I call gentle foods...simple proteins and carbs and vegies...the plainer the better...I've not had the celiac issues, but, I do know [and have learned] that keeping things more simple IF you have problems can help you eliminate foods that cause problems...
One for constipation I've used in the past is the "BART" diet. Banannas, Applesauce, Rice [plain-yuk] and Toast. I've used it a 'few' times and it seems to help...tho my taste buds need to 'do' 'things' to this combo and it is an impulse hard to control...Doing it for 2-3 days at a try usually seems to help work things along? I've 3+ docs suggest this option for the 'problem'.
As for the other end of the spectrum? I fast...Plain and simple...liquids are all I usually feel I can tolerate after a few days, I then gradually add in more solid foods...Thing to be totally sure about in the interim is to HYDRATE like it's going out of style!
Medications or supplements? Hard to tell if it's that or something else...I for one truly hope it's those first two!
Well, you'll find out? - j