What you have is just terrible. I was wondering have you ever had a pharmacogenetic test. It’s drug gene testing. They can take blood, saliva or cheek cells. It helps to identify what group of drugs give you side effects. The test can identify variations in genes that tell how you process drugs. I’m not sure if that would help you.
Some of these diagnosis most don’t know exist. Trying to locate a doctor is another problem. I wish you more days of feeling great.
Hi,
Fortunately I have a proactive Dr but her hands are tied with a limit of what she can autherise.
The best medication I have in my arsenal is work. I try to keep myself busy so I don't get too caught up in self pity, just potter around my workshop getting something done. I'm slowly getting through the back log of machines I'm building so I can get back to my hobby of building models. It is difficult to work with hands that don't do as I want and feel like tree stumps most of the time. But a little patients and perserverance gets me through. Strangely enough pick up a pair of tweezers and I can do anything without fumbling. Years of doing so have left me with the ability of instinctivly knowing how much pressure to apply to do the job. I suspect a lack of feeling in the finger tips could be responsible.
My last task is to get a second opinion as I find it difficult to believe I have autonomic polyneuropathy. I guess/ hope something else might be found which could have a treatment or possible cure, can't stop being optomistic. I guess I'm dreading confirmation though.
Cheers
I think most insurance companies allow a second opinion. I think you should do it if you can. Are you near a large city with a big name hospital. I recently moved to Georgia and I miss my doctors in Boston so much. It’s something you need to really think about. Hope it’s a good day for you.
IBS-C is very hard to treat. I have tried every diet. The FODMAP diet does not work for me. It is trial and error to get a balanced gut.
I take a good probiotic. I cannot eat a lot of high fiber foods nor take fiber supplements. Even oatmeal bothers my gut. I am also lactose intolerant. I take Linzess 72mcg at night for IBS-C and this has helped greatly and I take Bentyl for a spastic colon when I have a really bad flare from IBS-C. I am finding that even eating ice cream has now become a culprit....it use to only be drinking milk.
I do find that any added stress flares up my gut. Such as a stomach virus, lack of sleep, etc., Sometimes I cannot figure out what flares it up. IBS-C is very tiring and can flare-up for a couple days to a couple of months. What may work for one person may not work for another person.
Praying for answers for all of you. Blessings & Prayers...
I think most insurance companies allow a second opinion. I think you should do it if you can. Are you near a large city with a big name hospital. I recently moved to Georgia and I miss my doctors in Boston so much. It’s something you need to really think about. Hope it’s a good day for you.
Hi,
I'm not covered by insurance.
With autonomic polyneuropathy there aren't a lot of experts who know much about it anywhere, all they do is refer to Dr Google in the same manner I can. Testing for it is subjective with out a formal test procedure. I had two ED Dr's tell me they think it is ANS but I really don't want to believe it as there is nothing that can be done for me, if correct. My gastro expert is tending along the same diagnosis with a gut that is excedingly slow at digesting anything, with bowel and bladder that don't function correctly anymore.
I'm slowly becoming resigned to having ANS while trying to keep the focus on anything else. Head in the sand approach.
Cheers
There are just so so many who suffer constipation and overwhelming. You would think one Gastro might figure it out or a drug that works.
I’ve been on this site for years and more and more have it and all for different reasons.
I have not met one person who developed the problem the way I did and I wish I could. I had ACDF 3 fusion surgery June 2020. It was a long procedure. I woke up but my bowels have never worked since I woke up. I know anesthesia comes with risks and we sign away prior to going under. Things can happen. Now I’m in a place I’ll never go under again. It’s not a good place to be at age 70. I hope things will get better. I follow a strict diet and regimen of laxatives. Every day a surprise and I take them as they come.
Hi,
I wouldn't be surprised if they may have damaged the autonomic nerve system in the process. This can affect the digestion, bowels and bladder among other things. I got mine from a serious bout of Campylobacter and it just keeps getting more invasive thanks to T2 diabetes being "OK" for years unchecked. So far the digestive system is completely controlled with ANS from top to bottom.
Cheers
I think something happened but I’ll never find out why and I don’t care just don’t stop looking. I’ve gone through 10+ Gastro doctors and feel as soon as I say how it happened, list all the tests I’ve gone through, all I get is, you’ve had every test the only thing we do now is try to save your colon. I was scheduled twice for a colectomy and canceled as both got close. I’ve always wondered why seeing another neurologist wouldn’t be a good idea but they say I’ve had all the tests.
It was during Covid, the first scheduled surgery and surgeon asked if I’d get the Covid vaccines because I’d be in the hospital a while and Covid was bad then. I could get one July and august and surgery was September.
Prior to surgery I had the nuclear meal test for complete digestion. I passed with stomach,small bowel and large bowel emptying enough to go through surgery. I had the Covid vaccines which I was against but I did it. I canceled the surgery again because I just couldn’t agree removing my large colon was right. The surgeon was so understanding so I rebooked for January to try homeopathic medicine. Then I started having stomach problems. Took months with a new Gastro to check that test again and results less than 6 months later I failed the test severely and was diagnosed with gastroparesis. Call it a coincidence but the only thing I did differently was take the vaccine. I think it caused me to now have gastroparesis.
I was living near Boston then and Mass General had a study but because I had never been diagnosed with Covid I was unable to be in the study. It seems many were diagnosed with gastroparesis from Covid vaccine.
I just hope my colon hangs in and laxatives keep things moving at least 3 days a week if I’m lucky. I know so so many people are worse off than I so you need to get in a good place head wise, I am and vent occasionally. I love life, have been fortunate to travel when I was feeling better so things could be worse today. Have a great day everyone.
Hi,
That's my constant thought, there are others worse off than me, it helps me cope with my lot better.
With ANS it can be difficult to diagnose and especially if it is Dysautonomia which is more to the random type events. So if you are not present in such an event there is no way of telling and it comes down to being able to convey the event in terms medical staff understand and spark an incling of recognition in them, I guess seeing is believing!
It took me 12 years to convey in terms that they understood and related to, to diagnose the ANS. A great relief to have a diagnosis, short lived when I researched it and found what it involved and how so many of the symptoms I have match it. It was devatating to say the least finding this is a potential death sentance for me. With time I'm getting to grips with it and tell myself we all die anyway, so I might be a little sooner than expected.
I take Prucalopride, only 1/4 of a tablet currently, at night, which helps combine fluid with the stools. So far it only helps to make me more regular although I don't think the constipation is so bad either. I also use laxatives, at least 6 prunes per day and as much fluid as possible. I find canned peaches can help as well as does my home made tartare saurce, I just have to watch I don't go overboard or the reaction can be rapid and urgent!
Cheers
Hi,
Fortunately I have a proactive Dr but her hands are tied with a limit of what she can autherise.
The best medication I have in my arsenal is work. I try to keep myself busy so I don't get too caught up in self pity, just potter around my workshop getting something done. I'm slowly getting through the back log of machines I'm building so I can get back to my hobby of building models. It is difficult to work with hands that don't do as I want and feel like tree stumps most of the time. But a little patients and perserverance gets me through. Strangely enough pick up a pair of tweezers and I can do anything without fumbling. Years of doing so have left me with the ability of instinctivly knowing how much pressure to apply to do the job. I suspect a lack of feeling in the finger tips could be responsible.
My last task is to get a second opinion as I find it difficult to believe I have autonomic polyneuropathy. I guess/ hope something else might be found which could have a treatment or possible cure, can't stop being optomistic. I guess I'm dreading confirmation though.
Cheers
I think most insurance companies allow a second opinion. I think you should do it if you can. Are you near a large city with a big name hospital. I recently moved to Georgia and I miss my doctors in Boston so much. It’s something you need to really think about. Hope it’s a good day for you.
I had IBS-C and I since long covid, it has returned. I take IbGuard and it helps with bloating and gas. It also helps with spasms.
Hi,
I'm not covered by insurance.
With autonomic polyneuropathy there aren't a lot of experts who know much about it anywhere, all they do is refer to Dr Google in the same manner I can. Testing for it is subjective with out a formal test procedure. I had two ED Dr's tell me they think it is ANS but I really don't want to believe it as there is nothing that can be done for me, if correct. My gastro expert is tending along the same diagnosis with a gut that is excedingly slow at digesting anything, with bowel and bladder that don't function correctly anymore.
I'm slowly becoming resigned to having ANS while trying to keep the focus on anything else. Head in the sand approach.
Cheers
There are just so so many who suffer constipation and overwhelming. You would think one Gastro might figure it out or a drug that works.
I’ve been on this site for years and more and more have it and all for different reasons.
I have not met one person who developed the problem the way I did and I wish I could. I had ACDF 3 fusion surgery June 2020. It was a long procedure. I woke up but my bowels have never worked since I woke up. I know anesthesia comes with risks and we sign away prior to going under. Things can happen. Now I’m in a place I’ll never go under again. It’s not a good place to be at age 70. I hope things will get better. I follow a strict diet and regimen of laxatives. Every day a surprise and I take them as they come.
Hi,
I wouldn't be surprised if they may have damaged the autonomic nerve system in the process. This can affect the digestion, bowels and bladder among other things. I got mine from a serious bout of Campylobacter and it just keeps getting more invasive thanks to T2 diabetes being "OK" for years unchecked. So far the digestive system is completely controlled with ANS from top to bottom.
Cheers
I think something happened but I’ll never find out why and I don’t care just don’t stop looking. I’ve gone through 10+ Gastro doctors and feel as soon as I say how it happened, list all the tests I’ve gone through, all I get is, you’ve had every test the only thing we do now is try to save your colon. I was scheduled twice for a colectomy and canceled as both got close. I’ve always wondered why seeing another neurologist wouldn’t be a good idea but they say I’ve had all the tests.
It was during Covid, the first scheduled surgery and surgeon asked if I’d get the Covid vaccines because I’d be in the hospital a while and Covid was bad then. I could get one July and august and surgery was September.
Prior to surgery I had the nuclear meal test for complete digestion. I passed with stomach,small bowel and large bowel emptying enough to go through surgery. I had the Covid vaccines which I was against but I did it. I canceled the surgery again because I just couldn’t agree removing my large colon was right. The surgeon was so understanding so I rebooked for January to try homeopathic medicine. Then I started having stomach problems. Took months with a new Gastro to check that test again and results less than 6 months later I failed the test severely and was diagnosed with gastroparesis. Call it a coincidence but the only thing I did differently was take the vaccine. I think it caused me to now have gastroparesis.
I was living near Boston then and Mass General had a study but because I had never been diagnosed with Covid I was unable to be in the study. It seems many were diagnosed with gastroparesis from Covid vaccine.
I just hope my colon hangs in and laxatives keep things moving at least 3 days a week if I’m lucky. I know so so many people are worse off than I so you need to get in a good place head wise, I am and vent occasionally. I love life, have been fortunate to travel when I was feeling better so things could be worse today. Have a great day everyone.
Hi,
That's my constant thought, there are others worse off than me, it helps me cope with my lot better.
With ANS it can be difficult to diagnose and especially if it is Dysautonomia which is more to the random type events. So if you are not present in such an event there is no way of telling and it comes down to being able to convey the event in terms medical staff understand and spark an incling of recognition in them, I guess seeing is believing!
It took me 12 years to convey in terms that they understood and related to, to diagnose the ANS. A great relief to have a diagnosis, short lived when I researched it and found what it involved and how so many of the symptoms I have match it. It was devatating to say the least finding this is a potential death sentance for me. With time I'm getting to grips with it and tell myself we all die anyway, so I might be a little sooner than expected.
I take Prucalopride, only 1/4 of a tablet currently, at night, which helps combine fluid with the stools. So far it only helps to make me more regular although I don't think the constipation is so bad either. I also use laxatives, at least 6 prunes per day and as much fluid as possible. I find canned peaches can help as well as does my home made tartare saurce, I just have to watch I don't go overboard or the reaction can be rapid and urgent!
Cheers