Autoimmune problem - advice please.
 

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

One more time
 

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

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

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.

I am not sure I understand...
 

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

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

And--
 

--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

Autonomic
 

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:cool:

constipation...
 

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

Tony, please? Think it all thru?
 

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! :hug:
Well, you'll find out? - j

Gee... Just when you think there is nothing else that can be affected, along comes something new. I am so sorry to hear this, Tony.

Do you notice that this problem is aggravated by certain foods? How about eating fats? Does this bother you or cause any pain? Have you ever had any gallbladder problems?

If your doctor feels there is an autoimmune component causing some of these problems, I would suspect he would consider putting you on medication used in autoimmune disorders.


Cathie

Hi Tony
 

I understand about feeling low. My autonomic system was out of control for a long time.Boy was I sick.My BP was erractic and I was very unwell. I have spoken to a number of people with various autonomic problems like mine and yours,who have said that it often spontaneously resolves itself. I beleive this to be true. Just as our sensory symptoms change week to week and so forth,there is a good likelyhood that this is temporary... and it really am hoping it is.

My BP issues just resolved one day, just as quickly as they came on. And others who have had issues with bowels have told me that it resolves as well.

Don't give up hope,and please cheer up a bit,as this may go away on it's own very soon.

Tony, I have a suggestion...
 

Do these loose events occur as your opiate is wearing off?

Some people on long term opiate therapy develop physiological tolerance, and when the drug wears off, there can be a "mini" withdrawal, which would have diarrhea presenting.

I have seen loperamide (Imodium) which is OTC in USA given for this.

It is something to think about.

So in addition to evaluating your back (which might be the cause of your escalating pain), think about the timing of your meds, and when you get the diarrhea events.

These are the only other things I can think of to investigate for you.:o

i fixed it for you tony. titles have to be edited by mods after a certain length of time. just send me a pm if you need anything changed in the future. :)

Thank you all very much for your replies. They are both very helpful and thought provoking.

Glenn – I am going through the websites you listed with considerable interest. I may have a question or two to ask you later.

Kmeb – I realise they won’t see any connection to my PN but as you say I need to make sure there is nothing else to worry about. I should get the result as soon as I come round then I will have to think about future plans. Boy! Will I be nervous.

Mrs D – Thank you so much for all your suggestions. In the case of my back, I have to say that I have no back pains, especially lower back. I used to have trouble in that region when I was young but nothing to talk about for many years. How right you are about being thankful for normality!! We sure do take things for granted when we are young and until things start to go wrong.

Dahlek – I have thought a lot about the medicines and supplements that I take. I did overdo the magnesium citrate powder once! I am now aware of that. My diet is very limited now due to my sedentary life style. I try to eat fruit and rice as much as possible and have made a note of your BART diet. I had not heard of this until now. As for liquids I don’t find drinking an easy occupation. However I will have to try harder I know. Thank you for your kind wishes.

Cathie – Yes I do think that fats aggravate things a bit, so I have cut back on those quite a lot recently. I do have gallstones but was assured at my ultrasound last year that they were very “grainy” and nothing to worry about. As for autoimmune medicines, I guess if they are necessary I will have to go back to my neuro for his advice. He does know about the current problem and has said he will consider a short course of prednisilone if things continue to get worse. I am not sure about going down that path.

Aussie99 – It is interesting to read about the spontaneous resolving of autonomic problems, I would hope that happens quickly! As for my BP, that’s ok – I check it regularly because of my blocked arteries. I haven’t given up hope yet but it sure is hard to be optimistic with so many things going wrong.

Mrsd – I have just read your latest post regarding a possible opiate connection with my bowel problems. I have given this thought and can’t think of any particular occasion when there might have been a connection between the end period of my oxycontin and a bowel action. I do use loperamide vary rarely and only when absolutely necessary otherwise it turns things the other way again. As I said before it seems that the peristalsis in my bowel has completely packed up. When I told the consultant this he nodded and said this was to be expected if my problem was caused by my PN developing an autoimmune connection. He added that he would discuss that with me when and if he found no other problem on the 4th Oct.

Thank you all again for your posts which I am reading over and over. I will post the result of my exam that takes place on the 4th Oct and will try to stay sane until then.:rolleyes:

Tony

PS Curious – thank you for your help. I will PM in future if need be.

If loperamide is too strong...
 

you can take 1/2 of one you know. (or use the liquid and take only 1mg)
Often that helps with diarrhea without rebound constipation.
We often do that here..use 1/2 the typical dose. In USA the OTC version is
a tablet easily broken. The RX version however here is a capsule and not
adjustable that way.