This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi, I haven't posted much on this website but I love browsing around. For those of you who don't know me I don't have MS but a very good friend of mine has chronic progressive, he is now bedridden, paralyzed from the neck down because of this disabling disease. He is fed through a tube into his jejunum (small intestine) and experiences extreme acid indigestion between the hours of 3-4 and 7-8 in the afternoon (among many other symptoms). His only complaint despite his situation is this stomach acid and he would would be so grateful to find relief from it. The doctors have tried everything, they've pumped his stomach with baking soda, given him copious amounts of pepto bismol, peptid AC, etc. His entire gastrointestinal tract has been checked from top to bottom and there is absolutely no evidence of scarring or erosion in his esophagus due to the high acidity of stomach acids not to mention the fact that his feeding tube bypasses his stomach so there is nothing to stimulate the gastric juices there. One of the nurses and I were chatting the other day and he believes it may be some sort of neuralgia and if the doctors approach it from a neurological point of view instead of a gastrointestinal than they may be able to offer this man some relief. I know neuralgias are very common among MS patients however I have never heard of a neuralgia affecting the dermatomes supplying ones esophagus or whatever would be causing this burning sensation in his chest/throat. Is there anyone out there who has suffered a similar thing?

Lace,

I can't help with your query but do have one of my own. This may sound insensitive, but why would your friend wish to continue in such a dreadful condition? This situation is similar to a friend of my fathers who died some 20 years ago from MS. It's the sort of scenario I dread and I hope I would bail out way before I got to this position. What hope to the doctors give your friend - apart from palliative care? These stories really support my view that the so called 'wonderful' health profession has really let down those with some of the worse diseases.

Please send my regrads to your friend - he is a lot braver than I would be.

Bromley

That is a horrible situation. I have just a suggestion. I know that in the emergency rooms, they give what they call a 'Pink Lady'. It is a mixture of Maalox and xilocaine. It numbs the stomach quite well. If your friend tried that, he would know if the pain is really coming from the nerve endings in his stomach or from a more central source, like 'phantom pain'. We know he has no acid there but the nerves could still be sending false signals of pain like the neuropathic pains. If it is not the stomach, then they will have to treat it with meds that affect more the central nervous system. Good luck, Carole

Thank you both for the replies! I printed your post Carole and gave it to him yesterday. His doctors put him on a new med the other day that so far is working but he's going to hang onto your suggestion and give it a try if this other one doesn't work.

Bromley,
I don't believe it's insensitive at all, I appreciate your honesty and so does he. Thing is, he accepted the cards life dealt him a long long time ago and he doesn't look to the doctors for his hope (he says that's an awful lot of pressure to put on the health care profession). All he expects from them is palliative care, as long as they can keep him comfortable enough so he can continue living his life he's happy. This man has done more in the 20 odd years that he has been confined to a wheelchair/bed than most with a fully cooperative body will do in their entire life time. He told me a story of when he first was diagnosed with MS, he had started drinking quite heavily and one night his wife wrestled him to the ground and sat on him, she told him that he had MS and that he needed to start accepting that (that was a year before she died of breast cancer). After that he put away the booze and started doing more than just accepting and dealing with it. His first major project was to chair the committee that eliminated all physical barriers at Expo 86, he began Canada's first 100% accessible taxi fleet in 1988, he helped put together the team that brought accessible buses to the Greater Vancouver Regional District, he lobbied for the 'sacred space' a place of worship and prayer in the long term care facility that he lives, his most recent project is a recently approved proposal he drew up to have a solarium built in the facility where he lives, now he's working at hounding the bank for funding. He is an abundance of inspiration, hope and determination, he is a friend /brother/father/advisor/mentor/intercessor for me and many. He is also quite determined that in 3 years time he's going to two step with me. The very last thing he wants to do is 'bail out'. He dreams big, he prays big, and so far... his really big God, has never let him down.
-Lace

Lace,

Thanks for your response. I was in no way trying to be rude and can only respect the courage that your friend has. I suppose when faced with such situations different people deal with things differently - there's no right and wrong.

Pass on my best wishes to your friend.

Bromley (real name Ian)

Again, I, too, may be speaking out of turn. As one who has benefitted no much from the antibiotic therapy, I ask- why not if it is possible. This must be a very big-spirited man who has had incredible adversity and is the very essence of get beck on the horse. If it is possible, there may be nothing to lose. Bromley is much more diplomatic than I. Apologies to all if I should be sitting on my hands.

Rica

_________________
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.

A few years ago, I had what I though was horrible heartburn and acid problems. I tried the numbing coctail, but it didn't fix the pain. I then was given a special muscle relaxer for the GI tract. The Dx was esophogial spasms (I know its not spelled right, but you get the point) It felt really felt like acid, but it was the muscles spasming. Maybe your friend can look into that as a possible cause.

Na