Lesley, sounds like you have a plan. I'm sure you've told me about Kaiser before and I'd forgotten. I have found it is effective to take research with me when I need to be persuasive. Good luck and keep trying. I just have a hard time believing that this is as good as it gets for you.
hang in there.
Carol
I need help...
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Lesley,
Here's some additional fuel for the fire for any doc who claims that, since polio is a lower neuron disease, it can't affect the smooth muscles of the GI tract. This paper suggests otherwise:
GASTROINTESTINAL INVOLVEMENT IN THE POST-POLIO SYNDROME (PPS)
by Sinn Anuras, M.D.
BACKGROUND
During the late 1980's to early 1990's, Dr. Anuras was Director, Division of Gastroenterology, Department of Internal Medicine at Texas Tech University in Lubbock. Along with Terri Bozeman, R.N., they surveyed over 750 post-polio patients regarding their gastrointestinal symptoms. Following report is from a paper they delivered at The Second Texas-Oklahoma Post-Polio Symposium, September 21-22, 1991, at the Ramada Inn of Wichita Falls, TX.
(To that point, they had included 500 patients in the results; Table 3 below has been updated to reflect the symptoms of the first 754 participants in the study.)
ABSTRACT
Gastrointestinal involvement is common in the post-polio syndrome, and it appears to affect the entire gastrointestinal tract. Unfortunately, there are only a few studies in this fascinating area. More extensive studies are needed to understand the pathologic and pathophysiologic processes in this problem, so that patients can be treated properly.
We report our survey of gastrointestinal symptoms that could affect up to 50 per cent of the post-polio syndrome patients in this review. We also propose the underlying pathophysiologic changes, outline the diagnosis and treatment for difficulties of various parts of the gastrointestinal tract.
INTRODUCTION
Normal gastrointestinal motility is a function of the gastrointestinal smooth muscle and is regulated by both the intrinsic (myenteric plexus) and extrinsic nerves of the gastrointestinal tracts. Extrinsic nerves from the central nervous system (brain and spinal cord) connect the enteric nervous system (submucosal plexus and myenteric plexus) with the central nervous system. Therefore, any functional or structural abnormality of either the smooth muscles or the intrinsic or extrinsic nerves will result in gastrointestinal dysmotility causing gastrointestinal symptoms. The symptoms produced depend on areas of involvement. This abnormality may either involve the entire gastrointestinal tract or be limited only to certain parts depending on the underlying disease. Table 1 lists various causes of neuromuscular disease of the gastrointestinal tract that can cause gastrointestinal dysmotility by extrinsic denervation to certain parts of the gastrointestinal tract.
TABLE 1
CAUSES OF NEUROMUSCULAR DISEASE OF THE GASTROINTESTINAL TRACT
A. SMOOTH MUSCLE DISEASE
1. Familial Visceral Myopathies
a)Type I
b)Type II
c)Type III
2. Infantile and Childhood Visceral Myopathy
3. Connective Tissue Disease
a)Scleroderma
b)Dermatomyositis
c)Systemic lupus erythematosus
d)Mixed connective tissue disease
4. Muscular dystrophy
a)Myotonic dystrophy
b)Duchenne's muscular dystrophy
5. Amyloidosis
6. Metabolic Disease
a)Hyperthyroidism
b)Hypothyroidism
c)Hyperparathyroidism
d)Hypoparathyroidism
B. ENTERIC NERVE DISEASE
1. Familial Visceral Neuropathies
a)Autosomal dominant types
b)Autosomal recessive types
2. Congenital Disorders
a)Aganglionosis-Hirschsprung's disease
b)Hypoganglionosis
c)Hyperganglionosis-neurofibromatosis
3. Infectious Visceral Neuropathy
a)Parasitic-Chagas' disease
b)Viral-Poliomyelitis
4. Drug or Chemical Induced Visceral Neuropathy
5. Paraneoplastic Visceral Neuropathy
6. Parkinson's Disease
C. EXTRINSIC NERVE DISEASE
1. Spinal cord Injury
2. Multiple Sclerosis
3. Poliomyelitis
4. Diabetes Mellitus
----------
Results from our survey suggest that PPS may also cause damage to the intrinsic nerve (myenteric plexus) of the gastrointestinal tract. Future physiologic and pathologic studies of the gastrointestinal tract in PPS will elucidate these abnormalities.
Symptoms produced by gastrointestinal dysmotility are variable depending on the part of the gastrointestinal tract involved.
TABLE 2
SYMPTOMS PRODUCED BY DYSMOTILITY OF VARIOUS PARTS OF THE GASTROINTESTINAL TRACT
ORGANS --- SYMPTOMS
1. Oropharynx --- Difficulty initiating swallows, food pooling in the pharynx, choking when swallowing, aspiration and aspirated pneumonia in severe cases.
2. Esophagus --- Difficulty swallowing (dysphagia), food sticking in the mid-sternum area, occasional substernal pain with swallows (odynophagia).
3. Stomach --- Nausea, vomiting, abdominal fullness long after meal, recurrent symptoms of stomach outlet obstruction (gastroparesis).
4. Small intestine --- Abdominal pain and bloating after meal, nausea, vomiting, diarrhea, recurrent symptoms of small bowel obstruction in severe cases (intestinal pseudoobstruction).
5. Colon --- Constipation, abdominal pain and bloating, recurrent symptoms of colonic obstruction in severe cases (colonic pseudoobstruction).6. Anus --- Constipation.
----------
GASTROINTESTINAL INVOLVEMENT IN PPS
There are only a few studies of gastrointestinal involvement in polio survivors, and all are limited to oropharyngeal dysphagia. Gastrointestinal involvement has been virtually neglected by physicians who take care of PPS patients. We surveyed the nature and incidence of gastrointestinal symptoms in PPS patients by sending out questionnaires to 3,000 PPS patients. Table 3 lists the symptoms that we analyzed from the first 754 PPS patients who responded to our survey.
Note - the words in bold are my emphasis.
Love,
Polly
Here's some additional fuel for the fire for any doc who claims that, since polio is a lower neuron disease, it can't affect the smooth muscles of the GI tract. This paper suggests otherwise:
GASTROINTESTINAL INVOLVEMENT IN THE POST-POLIO SYNDROME (PPS)
by Sinn Anuras, M.D.
BACKGROUND
During the late 1980's to early 1990's, Dr. Anuras was Director, Division of Gastroenterology, Department of Internal Medicine at Texas Tech University in Lubbock. Along with Terri Bozeman, R.N., they surveyed over 750 post-polio patients regarding their gastrointestinal symptoms. Following report is from a paper they delivered at The Second Texas-Oklahoma Post-Polio Symposium, September 21-22, 1991, at the Ramada Inn of Wichita Falls, TX.
(To that point, they had included 500 patients in the results; Table 3 below has been updated to reflect the symptoms of the first 754 participants in the study.)
ABSTRACT
Gastrointestinal involvement is common in the post-polio syndrome, and it appears to affect the entire gastrointestinal tract. Unfortunately, there are only a few studies in this fascinating area. More extensive studies are needed to understand the pathologic and pathophysiologic processes in this problem, so that patients can be treated properly.
We report our survey of gastrointestinal symptoms that could affect up to 50 per cent of the post-polio syndrome patients in this review. We also propose the underlying pathophysiologic changes, outline the diagnosis and treatment for difficulties of various parts of the gastrointestinal tract.
INTRODUCTION
Normal gastrointestinal motility is a function of the gastrointestinal smooth muscle and is regulated by both the intrinsic (myenteric plexus) and extrinsic nerves of the gastrointestinal tracts. Extrinsic nerves from the central nervous system (brain and spinal cord) connect the enteric nervous system (submucosal plexus and myenteric plexus) with the central nervous system. Therefore, any functional or structural abnormality of either the smooth muscles or the intrinsic or extrinsic nerves will result in gastrointestinal dysmotility causing gastrointestinal symptoms. The symptoms produced depend on areas of involvement. This abnormality may either involve the entire gastrointestinal tract or be limited only to certain parts depending on the underlying disease. Table 1 lists various causes of neuromuscular disease of the gastrointestinal tract that can cause gastrointestinal dysmotility by extrinsic denervation to certain parts of the gastrointestinal tract.
TABLE 1
CAUSES OF NEUROMUSCULAR DISEASE OF THE GASTROINTESTINAL TRACT
A. SMOOTH MUSCLE DISEASE
1. Familial Visceral Myopathies
a)Type I
b)Type II
c)Type III
2. Infantile and Childhood Visceral Myopathy
3. Connective Tissue Disease
a)Scleroderma
b)Dermatomyositis
c)Systemic lupus erythematosus
d)Mixed connective tissue disease
4. Muscular dystrophy
a)Myotonic dystrophy
b)Duchenne's muscular dystrophy
5. Amyloidosis
6. Metabolic Disease
a)Hyperthyroidism
b)Hypothyroidism
c)Hyperparathyroidism
d)Hypoparathyroidism
B. ENTERIC NERVE DISEASE
1. Familial Visceral Neuropathies
a)Autosomal dominant types
b)Autosomal recessive types
2. Congenital Disorders
a)Aganglionosis-Hirschsprung's disease
b)Hypoganglionosis
c)Hyperganglionosis-neurofibromatosis
3. Infectious Visceral Neuropathy
a)Parasitic-Chagas' disease
b)Viral-Poliomyelitis
4. Drug or Chemical Induced Visceral Neuropathy
5. Paraneoplastic Visceral Neuropathy
6. Parkinson's Disease
C. EXTRINSIC NERVE DISEASE
1. Spinal cord Injury
2. Multiple Sclerosis
3. Poliomyelitis
4. Diabetes Mellitus
----------
Results from our survey suggest that PPS may also cause damage to the intrinsic nerve (myenteric plexus) of the gastrointestinal tract. Future physiologic and pathologic studies of the gastrointestinal tract in PPS will elucidate these abnormalities.
Symptoms produced by gastrointestinal dysmotility are variable depending on the part of the gastrointestinal tract involved.
TABLE 2
SYMPTOMS PRODUCED BY DYSMOTILITY OF VARIOUS PARTS OF THE GASTROINTESTINAL TRACT
ORGANS --- SYMPTOMS
1. Oropharynx --- Difficulty initiating swallows, food pooling in the pharynx, choking when swallowing, aspiration and aspirated pneumonia in severe cases.
2. Esophagus --- Difficulty swallowing (dysphagia), food sticking in the mid-sternum area, occasional substernal pain with swallows (odynophagia).
3. Stomach --- Nausea, vomiting, abdominal fullness long after meal, recurrent symptoms of stomach outlet obstruction (gastroparesis).
4. Small intestine --- Abdominal pain and bloating after meal, nausea, vomiting, diarrhea, recurrent symptoms of small bowel obstruction in severe cases (intestinal pseudoobstruction).
5. Colon --- Constipation, abdominal pain and bloating, recurrent symptoms of colonic obstruction in severe cases (colonic pseudoobstruction).6. Anus --- Constipation.
----------
GASTROINTESTINAL INVOLVEMENT IN PPS
There are only a few studies of gastrointestinal involvement in polio survivors, and all are limited to oropharyngeal dysphagia. Gastrointestinal involvement has been virtually neglected by physicians who take care of PPS patients. We surveyed the nature and incidence of gastrointestinal symptoms in PPS patients by sending out questionnaires to 3,000 PPS patients. Table 3 lists the symptoms that we analyzed from the first 754 PPS patients who responded to our survey.
Note - the words in bold are my emphasis.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Me again!
I have the full paper from the above post, which includes diagnostic and treatment recommendations. Please PM me your email address if you want me to send it to you. This issue reminds me a lot of MC - not enough research being done and what is being done is not getting out to the practicing GIs. Sigh.
You might want to check out Texas Tech U. where this paper originated. Perhaps they are still doing research or maybe they know how you can contact Dr. Anuras.
Love,
Polly
I have the full paper from the above post, which includes diagnostic and treatment recommendations. Please PM me your email address if you want me to send it to you. This issue reminds me a lot of MC - not enough research being done and what is being done is not getting out to the practicing GIs. Sigh.
You might want to check out Texas Tech U. where this paper originated. Perhaps they are still doing research or maybe they know how you can contact Dr. Anuras.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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Polly,
What always strikes me as most egregious is when doctors say with confidence things they can't possibly know, like "diet has no relationship to IBD's" or, now, "polio does not effect the GI tract". It is understandable although frustrating when little to no research is done on some conditions, but professing ignorance is so much better than making patently false statements. I suppose doctors usually believe what they say, but still it is beyond frustrating. I am grateful that I am able to look beyond medical opinion when it strikes me as either wrong or simply not helpful, but so many people believe everything a doctor says and then they suffer for their beliefs.
Jean
What always strikes me as most egregious is when doctors say with confidence things they can't possibly know, like "diet has no relationship to IBD's" or, now, "polio does not effect the GI tract". It is understandable although frustrating when little to no research is done on some conditions, but professing ignorance is so much better than making patently false statements. I suppose doctors usually believe what they say, but still it is beyond frustrating. I am grateful that I am able to look beyond medical opinion when it strikes me as either wrong or simply not helpful, but so many people believe everything a doctor says and then they suffer for their beliefs.
Jean
Hi Jean,
I think there are a number of reasons for what you describe. Part of it may be "cultural", when in the not too distant past, docs were seen as "gods" - nurses were actually taught to stand up when they entered the room. LOL! And the patient expected the doc to make pronouncements, to be the final word (which, I'm sure, put a lot of pressure on the docs). Also, training probably has a lot to do with it. My training program was relatively enlightened - I remember being taught that "two heads are better than one, three better than two, etc., when making diagnostic or treatment decisions. Also, that the words "always" and "never" should not be in a doc's vocabulary. And that there is no such thing as a "textbook" case. I guess ego plays a role too. And personality......by nature I have always been one to question the status quo. Genes maybe? (My parents were very conventional). Whenever I hear the words "always" or "never" or "can't" , it is like waving a red flag in front of a bull. (giggle)
Love,
Polly
I think there are a number of reasons for what you describe. Part of it may be "cultural", when in the not too distant past, docs were seen as "gods" - nurses were actually taught to stand up when they entered the room. LOL! And the patient expected the doc to make pronouncements, to be the final word (which, I'm sure, put a lot of pressure on the docs). Also, training probably has a lot to do with it. My training program was relatively enlightened - I remember being taught that "two heads are better than one, three better than two, etc., when making diagnostic or treatment decisions. Also, that the words "always" and "never" should not be in a doc's vocabulary. And that there is no such thing as a "textbook" case. I guess ego plays a role too. And personality......by nature I have always been one to question the status quo. Genes maybe? (My parents were very conventional). Whenever I hear the words "always" or "never" or "can't" , it is like waving a red flag in front of a bull. (giggle)
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Polly,
My father was an MD and not particularly egotistical or godlike. Perhaps that's why I have never assumed doctors have godlike wisdom. I used to be able to just call my father up, tell him what was wrong with me and he would write me a prescription. I remember the first time I had a UTI after he had died and I had to go see a doctor rather than just call my father up. I told the doctor what was wrong with me and he said in an arrogant tone "how do you know?" as if I could not possibly possess such knowledge. It was a shocking entry into the world of being a patient. The family doctor I have now is open-minded and does not believe that she has infinite wisdom. She doesn't get everything right but she will admit ignorance and is willing to entertain new perspectives. It's refreshing.
When I talk about "doctors" I of course don't mean all doctors and I exclude you from my harsh generalizations, of course.
Lesley,
I am sorry to have hijacked this thread. I hope you find some answers. I too seem to have motility problems that go beyond the issues of food sensitivities which I think I have pretty well in hand. Mine aren't polio related. I was diagnosed with pelvic floor dysfunction a number of years ago and I think that might be the source of the issues but of course I am not sure. I have given up trying to find solutions from "professionals". I wish you better luck than I have had.
Jean
My father was an MD and not particularly egotistical or godlike. Perhaps that's why I have never assumed doctors have godlike wisdom. I used to be able to just call my father up, tell him what was wrong with me and he would write me a prescription. I remember the first time I had a UTI after he had died and I had to go see a doctor rather than just call my father up. I told the doctor what was wrong with me and he said in an arrogant tone "how do you know?" as if I could not possibly possess such knowledge. It was a shocking entry into the world of being a patient. The family doctor I have now is open-minded and does not believe that she has infinite wisdom. She doesn't get everything right but she will admit ignorance and is willing to entertain new perspectives. It's refreshing.
When I talk about "doctors" I of course don't mean all doctors and I exclude you from my harsh generalizations, of course.
Lesley,
I am sorry to have hijacked this thread. I hope you find some answers. I too seem to have motility problems that go beyond the issues of food sensitivities which I think I have pretty well in hand. Mine aren't polio related. I was diagnosed with pelvic floor dysfunction a number of years ago and I think that might be the source of the issues but of course I am not sure. I have given up trying to find solutions from "professionals". I wish you better luck than I have had.
Jean
-
Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Lesley I think Polly may be onto something. These past months in dealing with Myasthenia Gravis, I have come to appreciate the importance of muscular control and tone of the GI tract.
For MG I am prescribed a neuromuscular medicine called Mestinon (Pyridostigmine) which increases the levels of acetylcholine in your body to help overcome the effects of muscular dystrophy that MG brings on. When you first start taking Mestinon it floods the GI system with acetylcholine, which dramatically increases your motility. For a 'normal' person this causes D, if you have neuromuscular issues of the GI tract it helps regulate 'normans'. In France, low dose Mestinon is sold over the counter to help the problems you are describing in your threads over the past many months.
I do wonder if there is a muscular control element to what you are dealing with. I do know my GI doctor is familiar with Mestinon as he mentioned he prescribed it to help with C which is a result of GI muscle control / motility issues.
I hope you feel better soon
For MG I am prescribed a neuromuscular medicine called Mestinon (Pyridostigmine) which increases the levels of acetylcholine in your body to help overcome the effects of muscular dystrophy that MG brings on. When you first start taking Mestinon it floods the GI system with acetylcholine, which dramatically increases your motility. For a 'normal' person this causes D, if you have neuromuscular issues of the GI tract it helps regulate 'normans'. In France, low dose Mestinon is sold over the counter to help the problems you are describing in your threads over the past many months.
I do wonder if there is a muscular control element to what you are dealing with. I do know my GI doctor is familiar with Mestinon as he mentioned he prescribed it to help with C which is a result of GI muscle control / motility issues.
I hope you feel better soon
Joe