After waiting forever, and sending several emails re: the PPS article this is what I got back:
"THe article Does not" prove" the Any associations it only suggests " possible associations" There is no control group and the data involves only A portion Of the 3000 patients that were accessible. Symptoms Do not prove causation. This Article was not peer reviewed , and I doubt that it could Be published in any journal ."
NO acknowledgement that as I had polio there could be a connection. Not even a vague interest in a possible connection. No interest that a physician steered me towards this idea. I asked him to let me know if he thought there might be a connection re:why I am still so sick and not healing, not for a comment on whether the article was scholarly or not.
WHAT AN ASSHOLE! And an asshole who doesn't know how to use capitals.
I am so tired of feeling this sick. And Licorice has such a squirty tummy today. She is so stinky. And she sleeps with me.
What a pair.
Paging Polly...
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Oh, ratz, Lesley! Here is what I say to your doc : YoU are a pOopyHeAd.
How discouraging, although I am not surprised, unfortunately. Have you tried tracking down the doc who wrote the original paper? Maybe we can find him or at least some docs that trained with him. I would be happy to try to help with this, if you wish.
I can't believe that he refuses to look at your underlying post-polio syndrome. What a royal jerk!!!!
Love,
Polly
How discouraging, although I am not surprised, unfortunately. Have you tried tracking down the doc who wrote the original paper? Maybe we can find him or at least some docs that trained with him. I would be happy to try to help with this, if you wish.
I can't believe that he refuses to look at your underlying post-polio syndrome. What a royal jerk!!!!
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
All he did was mock the article for not being scholarly enough. Didn't relate to the hypothesis, nor to the fact that it might connect to me as a patient. All I wanted was to raise this as something that might affect ME, patient ME (in both senses of the word). He totally ignores me in this altogether.
I really think the polio might have (at least partially) caused the gastroparesis, and the decreased motility of the colon. Makes such sense!
It might be very interesting to talk to him about it, but do you think there is anything that can be done beyond what I am doing? I looked at the tests they used and, frankly, I have no desire to go through them.
It would have to be a phone conversation since I can't afford to go anywhere right now. I am trying to work on my next trip to see the grandkids, which probably involves leaving Licorice (not happy about it therefore procrastinating) and going through, at the very least, the difficulties I had last time.
What do you think? My brain has/is collapsing right now.
I really think the polio might have (at least partially) caused the gastroparesis, and the decreased motility of the colon. Makes such sense!
It might be very interesting to talk to him about it, but do you think there is anything that can be done beyond what I am doing? I looked at the tests they used and, frankly, I have no desire to go through them.
It would have to be a phone conversation since I can't afford to go anywhere right now. I am trying to work on my next trip to see the grandkids, which probably involves leaving Licorice (not happy about it therefore procrastinating) and going through, at the very least, the difficulties I had last time.
What do you think? My brain has/is collapsing right now.
Lesley,
You're right, your doc is a real jewel, and I'm sure he has never seen the sun. As Mr. Rogers would have said, "Can you say Lazy?" Lazy people are always looking for excuses that will save them the effort required to study and learn something new.
I hope that you can find a way to change providers, so that you can move on to a real doctor before that one does any more damage to your health.
Tex
You're right, your doc is a real jewel, and I'm sure he has never seen the sun. As Mr. Rogers would have said, "Can you say Lazy?" Lazy people are always looking for excuses that will save them the effort required to study and learn something new.
I hope that you can find a way to change providers, so that you can move on to a real doctor before that one does any more damage to your health.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Easy to comment on technicalities rather than relate to substance.
Flummoxed right now. I am SO Sick of this. 2 years into it and no improvement in sight. I have a constant feeling of heaviness, shooting pains, attacks of cramps that feel like labor pains, GERD, weakness and exhaustion. And I am eating so few foods. I don't know where to go next.
Is this what I have to live with for the rest of my life? NEVER feeling even vaguely good for a couple of hours a day.
Lesley shut up! There are people in way worse situations that yours!
Flummoxed right now. I am SO Sick of this. 2 years into it and no improvement in sight. I have a constant feeling of heaviness, shooting pains, attacks of cramps that feel like labor pains, GERD, weakness and exhaustion. And I am eating so few foods. I don't know where to go next.
Is this what I have to live with for the rest of my life? NEVER feeling even vaguely good for a couple of hours a day.
Lesley shut up! There are people in way worse situations that yours!
That article was not meant to be a "scholarly" publication - it is simply a summary of the expertise and experience of the researcher who probably has more experience with GI issues in post-polio syndrome than anyone else in the world. Too bad your doc is not interested in learning something new that might benefit you. But that would require time and effort, not to mention interest and an open mind.
Are you really not interested in any further testing? Or are you afraid that your doc/insurer would not approve it? No way to know if there is any stone unturned for you until we get in touch with some folks who truly do understand this condition and its long-term sequelae. There may even be some new thoughts about treatment since that paper was written.
Love,
Polly
P.S. You would think that someone who is fond of "technicalities" would pay more attention to capitalization. Tee Hee. Sorry, just a weak attempt to lighten things up. I can hear how frustrated and exhausted you are with dealing with this.
Are you really not interested in any further testing? Or are you afraid that your doc/insurer would not approve it? No way to know if there is any stone unturned for you until we get in touch with some folks who truly do understand this condition and its long-term sequelae. There may even be some new thoughts about treatment since that paper was written.
Love,
Polly
P.S. You would think that someone who is fond of "technicalities" would pay more attention to capitalization. Tee Hee. Sorry, just a weak attempt to lighten things up. I can hear how frustrated and exhausted you are with dealing with this.
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Sorry to hear of all your struggles, I have no experience with what your going through but totally understand, like most of us, how frustrating it is to be ignored by our doctors. Hope you find relief soon.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Easier said than done, Jon. This is the Kaiser group, with which I am very satisfied EXCEPT for the GIs.
Deb, your hug is very welcome!
Please forgive my blatant lifting from your answer Polly. I didn't give you credit.
This is what I answered.
"That article was not meant to be a "scholarly" publication - it is simply a summary of the expertise and experience of the researcher who probably has more experience with GI issues in post-polio syndrome than anyone else in the world.
I do know the difference.
I thought it was interesting and maybe helpful to look at my possible underlying post-polio syndrome, and asked you to consider it as a hypothesis for my ongoing illness and acute discomfort.
I do not know where to turn from here."
OK Polly. I KNOW my doc won't refer me, without which it will not be covered. However, it just might be the right stone to turn, and, moreover they MIGHT be testing and I could get in on that.
How do I find him? I haven't had success with googling.
Deb, your hug is very welcome!
Please forgive my blatant lifting from your answer Polly. I didn't give you credit.
This is what I answered.
"That article was not meant to be a "scholarly" publication - it is simply a summary of the expertise and experience of the researcher who probably has more experience with GI issues in post-polio syndrome than anyone else in the world.
I do know the difference.
I thought it was interesting and maybe helpful to look at my possible underlying post-polio syndrome, and asked you to consider it as a hypothesis for my ongoing illness and acute discomfort.
I do not know where to turn from here."
OK Polly. I KNOW my doc won't refer me, without which it will not be covered. However, it just might be the right stone to turn, and, moreover they MIGHT be testing and I could get in on that.
How do I find him? I haven't had success with googling.
