I'm not familiar with "ineffective". The doctors I've seen are the neurologist, the speech therapist (pathologist) and two ENT doctors. The neurologist has suggested a specialist neuronasopharyngologist, which is a neurologist/ENT. That would mean an overnight trip to OHSU, in Portland. I live in central Oregon, close to many good medical services, but not all of them. And a long way from the nearest Mayo.
Things I do to be safe: drink small sips, inhaling first; eat small bites and chew well and long; try to lubricate the food; do focused swallowing; wait for it to move down, chasing it with a sip of liquid; then on to the next bite, etc. Sometimes, it takes 2 or 3 swallowing motions to create the necessary pressure in my esophagus.
My sister had severe swallowing issues, had Botox injections, surgeries, and then couldn't swallow at all, and had a peg tube. She would vomit at any food smell, so her husband cooked on his high end grill outside. She couldn't go to a restaurant, something they did a lot before her illness. An army of doctors never were able to make a diagnosis, and she died a few years ago. Of my 5 siblings, she was the closest to me, and it's still a big loss. Because I have some of the same problems as she, I know I worry that I'm headed down the same road.
Sorry. None of that was anything near encouraging.
I assume you've had head MRIs and CTs. One thing I learned is that I have silent reflux, which means asymptomatic. It happens without me knowing it. Interesting.
I think I've googled just about everything I came across, and continue to do so. The doctors know that I understand what they're saying, and I want all the details. Sometimes I feel badly about seeing some of them so often because I know they don't get rich off Medicare patients. I'm just thankful for them all.
Oh and here's a good one... I also have an "accessory" spleen! It's what the radiologist read on the MRI as a lesion. But then the Gastro doc told me about 10% of the population have this accessory spleen. I'm being referred to a oncology/hemotologist because the spleen I am told has to do with your blood. . It's always an adventure!
Thank you for sharing.. It makes me feel not so alone. Every time I turn around I have a new "unusual" diagnosis. I've not even revealed ALL of my disorders on the Mayo connect yet, but I appreciate the mentor help here!
I have been instinctively already been doing all of these things too. I can choke so easily . but the Gastro dr's nurse told me that there is nothing that can be done for it but that they want me to come into the clinic to discuss it with the Doc. I live in NE Missouri. I want to go to the Scottsdale Mayo again I used to live in Mesa and went there in like 2009. I hope we can go forth the winter. If so I'll see about making visits to address everything at once.
So you are saying that Neurologist would handle this disorder, hmmm. I have one for my (FGFR3 Antibody cause)PERIPHERAL NEUROPATHY AND ONE FOR SLEEP APNEA. THIS IS HELPFUL to know what you are doing and I can get an idea of who to see. I'm sorry for your loss and I understand how the genetics can be causing you distress..I am intrigued that this is neurological as it would go along with my other Neuropathy issues, possibly caused by the antibody!
Thank you for sharing.. It makes me feel not so alone. Every time I turn around I have a new "unusual" diagnosis. I've not even revealed ALL of my disorders on the Mayo connect yet, but I appreciate the mentor help here!
I have been instinctively already been doing all of these things too. I can choke so easily . but the Gastro dr's nurse told me that there is nothing that can be done for it but that they want me to come into the clinic to discuss it with the Doc. I live in NE Missouri. I want to go to the Scottsdale Mayo again I used to live in Mesa and went there in like 2009. I hope we can go forth the winter. If so I'll see about making visits to address everything at once.
So you are saying that Neurologist would handle this disorder, hmmm. I have one for my (FGFR3 Antibody cause)PERIPHERAL NEUROPATHY AND ONE FOR SLEEP APNEA. THIS IS HELPFUL to know what you are doing and I can get an idea of who to see. I'm sorry for your loss and I understand how the genetics can be causing you distress..I am intrigued that this is neurological as it would go along with my other Neuropathy issues, possibly caused by the antibody!
Another note.. It's been happening for YEARS! I'm feeling just to finally have an answer as for liked 30 + yrs I've been told nothing could be found. It's been an issue for soooo long. I even shy away from pills or vitamins that are too easy to get stuck.
Hi Peops my story has an unusual result I was diagnosed with PN when I lived in Australia I was working as a bookmaker on a Masonic charitable golf day
When it finished I didn't get collected as planned so had to walk back to the club house and with out any warning the pain of walking was unbearable
So it was of to the Drs who referred me to the specialist there followed MRI scans sensitive tests and even a HIV test (negative) it was after all these tests I was told I had PN slowly it was getting worse I moved back to the UK more tests and was told it shouldn't get any worse How wrong that was over time I've tried several off the recommended painkillers gabapentin endone OxyContin solpoldol & morphine the pain was getting worse the pain killers were playing with my mind and dragging my body down I even discussed cannabis with my Dr who would try it if it became legal, but the pain was becoming unbearable often at an 8/9' pain leval action was needed so I took my self off of all pain killers and got the phone no of a woman here in Ireland called her up and had a good chat with her spoke of my problems and asked her if she could or would try to help. Although she had never attempted any thing like it she was prepared to have a go if I would accept it might not produce results l met up with her some days later and spent 2+ hours with her with a pain leval of the 8/9 range when we finished the meeting my pain leval was down to a leval 2 that was some 4 months ago and that is how it has stayed ever since what a difference it has made to my life and it's great to have a good nights sleep , now your all wondering what could replace major pain killers to such a degree well it's something I have always believed in HYPNOTHERAPY
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@So glad you are sleeping better. Neuropathy pain is agony!
@You were on a rather low dose of abstention, and I hope a higher dose is helping you.
@darlia
I'm not familiar with "ineffective". The doctors I've seen are the neurologist, the speech therapist (pathologist) and two ENT doctors. The neurologist has suggested a specialist neuronasopharyngologist, which is a neurologist/ENT. That would mean an overnight trip to OHSU, in Portland. I live in central Oregon, close to many good medical services, but not all of them. And a long way from the nearest Mayo.
Things I do to be safe: drink small sips, inhaling first; eat small bites and chew well and long; try to lubricate the food; do focused swallowing; wait for it to move down, chasing it with a sip of liquid; then on to the next bite, etc. Sometimes, it takes 2 or 3 swallowing motions to create the necessary pressure in my esophagus.
My sister had severe swallowing issues, had Botox injections, surgeries, and then couldn't swallow at all, and had a peg tube. She would vomit at any food smell, so her husband cooked on his high end grill outside. She couldn't go to a restaurant, something they did a lot before her illness. An army of doctors never were able to make a diagnosis, and she died a few years ago. Of my 5 siblings, she was the closest to me, and it's still a big loss. Because I have some of the same problems as she, I know I worry that I'm headed down the same road.
Sorry. None of that was anything near encouraging.
I assume you've had head MRIs and CTs. One thing I learned is that I have silent reflux, which means asymptomatic. It happens without me knowing it. Interesting.
I think I've googled just about everything I came across, and continue to do so. The doctors know that I understand what they're saying, and I want all the details. Sometimes I feel badly about seeing some of them so often because I know they don't get rich off Medicare patients. I'm just thankful for them all.
Jim
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1 ReactionThanks!
Oh and here's a good one... I also have an "accessory" spleen! It's what the radiologist read on the MRI as a lesion. But then the Gastro doc told me about 10% of the population have this accessory spleen. I'm being referred to a oncology/hemotologist because the spleen I am told has to do with your blood. . It's always an adventure!
Thank you for sharing.. It makes me feel not so alone. Every time I turn around I have a new "unusual" diagnosis. I've not even revealed ALL of my disorders on the Mayo connect yet, but I appreciate the mentor help here!
I have been instinctively already been doing all of these things too. I can choke so easily . but the Gastro dr's nurse told me that there is nothing that can be done for it but that they want me to come into the clinic to discuss it with the Doc. I live in NE Missouri. I want to go to the Scottsdale Mayo again I used to live in Mesa and went there in like 2009. I hope we can go forth the winter. If so I'll see about making visits to address everything at once.
So you are saying that Neurologist would handle this disorder, hmmm. I have one for my (FGFR3 Antibody cause)PERIPHERAL NEUROPATHY AND ONE FOR SLEEP APNEA. THIS IS HELPFUL to know what you are doing and I can get an idea of who to see. I'm sorry for your loss and I understand how the genetics can be causing you distress..I am intrigued that this is neurological as it would go along with my other Neuropathy issues, possibly caused by the antibody!
-
Like -
Helpful -
Hug
1 ReactionAnother note.. It's been happening for YEARS! I'm feeling just to finally have an answer as for liked 30 + yrs I've been told nothing could be found. It's been an issue for soooo long. I even shy away from pills or vitamins that are too easy to get stuck.
This is what they called it but when I see the official report, I'm sure it says more.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5036831/
Hi Peops my story has an unusual result I was diagnosed with PN when I lived in Australia I was working as a bookmaker on a Masonic charitable golf day
When it finished I didn't get collected as planned so had to walk back to the club house and with out any warning the pain of walking was unbearable
So it was of to the Drs who referred me to the specialist there followed MRI scans sensitive tests and even a HIV test (negative) it was after all these tests I was told I had PN slowly it was getting worse I moved back to the UK more tests and was told it shouldn't get any worse How wrong that was over time I've tried several off the recommended painkillers gabapentin endone OxyContin solpoldol & morphine the pain was getting worse the pain killers were playing with my mind and dragging my body down I even discussed cannabis with my Dr who would try it if it became legal, but the pain was becoming unbearable often at an 8/9' pain leval action was needed so I took my self off of all pain killers and got the phone no of a woman here in Ireland called her up and had a good chat with her spoke of my problems and asked her if she could or would try to help. Although she had never attempted any thing like it she was prepared to have a go if I would accept it might not produce results l met up with her some days later and spent 2+ hours with her with a pain leval of the 8/9 range when we finished the meeting my pain leval was down to a leval 2 that was some 4 months ago and that is how it has stayed ever since what a difference it has made to my life and it's great to have a good nights sleep , now your all wondering what could replace major pain killers to such a degree well it's something I have always believed in HYPNOTHERAPY
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Helpful -
Hug
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