Living With Neuropathy: The journey of one PNer
By Pati Gerrard
The wait is over
Well, not quite over yet – but will be by the end of 2008.
A lot happened during 2008, beginning with my determination to get to the root of the problem. I started with internet searches. Doctor K had always been open to running lab tests I happened to see recommended in articles. So, I thought instead of just giving him a list of my recent symptoms, I could also show him the articles I had found.
I tried several searches for SFN combined with some of my more recent symptoms like lower back pain, fatigue, balance, concentration, memory, bladder, etc. In four short months my list of symptoms had really grown. I have always kept copies of my lab tests, so combined the searches with any abnormal results.
I kept saving articles that were possible maybes, but there were none I could call THE ARTICLE. You know – THE ARTICLE that would describe all of my new symptoms wrapped up in one neat package of symptoms, diagnosis and treatment. It just wasn’t there.
One article from a local paper kept creeping up in the Google searches, but I had ignored it – after all, what would a local paper have that could answer my burning questions. So, when Google suggested it for the umpteenth time, I finally opened the page and started to read. It was titled “Exposed Nerves”, and was about a diagnostic testing lab that had recently opened at one of the local hospitals. Evidently Google thought it required reading, so I decided to oblige.
The lab it described was an Autonomic Testing Lab, and the article began with: “Although their tests have come back normal, their problems persist. Sometimes, they are even told that their symptoms might be tied to a psychological condition rather than a physiological one. For those with diseases of the autonomic nervous system, pinpointing their exact problem can be very difficult. “
I didn’t think my PN was related to the autonomic nervous system, but Google had my attention.
Then, there IT was – about halfway down the middle column were listed the 5 disorders tested. Second in the list was (drum roll) Small Fiber Peripheral Neuropathy, followed by the stated purpose of the tests:
- Detect the presence of an autonomic disorder
- Quantify the severity of the abnormality or disorder.
- Determine the distribution of the disorder.
(Does it involve the heart, brain and extremities?)
- Pinpoint the main site of the abnormality.
- Grade the degree of autonomic failure if present
The article ended with: “…95 percent of the patients we test have tests that are abnormal… This is perhaps not surprising considering most of these patients have been through a battery of other tests before being referred to the lab.”
This was IT. This was THE ARTICLE. Oh, Google, though art god among search engines. I will never question your advice again.
Armed with new information, I now started a search of “autonomic disorders”. Google suggested ‘Autonomic Nervous System Disorders’, ‘Autonomic Neuropathy’ and ‘Dysautonomia’. By now I trusted Google, and started through the myriad of articles related to Google’s suggestions. Further investigation showed the terms to be synonymous. Damn Google is smart.
The more I read about Autonomic Neuropathy, the more convinced I was that our nervous system, whether peripheral or autonomic is terribly confused. The NIH description of autonomic neuropathy follows in part, and will sound very familiar to other PNers:
Your autonomic nervous system is the part of your nervous system that controls involuntary actions, such as the beating of your heart and the widening or narrowing of your blood vessels. When something goes wrong in this system, it can cause serious problems… Autonomic nervous system disorders can occur alone or as the result of another disease… Problems can affect either part of the system, as in complex regional pain syndromes, or all of the system. Some types are temporary, but many worsen over time… Some autonomic nervous system disorders get better when an underlying disease is treated. Often, however, there is no cure. In that case, the goal of treatment is to improve symptoms
If you substituted ‘autonomic nervous system’ with ‘peripheral or somatic nervous system’, and ‘involuntary actions’ with ‘sensory/motor functions’, you would be describing the difficulties with diagnosing PN. And from what I read, it is just as difficult to diagnose autonomic dysfunction.
The symptoms for autonomic dysfunction/neuropathy are as varied as the symptoms for peripheral neuropathy, and I didn’t have all of them any more than I have all the symptoms of PN, but I had a good number of the symptoms, even symptoms like IBS and dry eyes and mouth that I hadn’t thought of as an actual symptom of anything.
This was all confusing. If my neuropathy was Small Fiber Peripheral, how could I also have symptoms of Autonomic Neuropathy? So I expanded my search to “Autonomic Small Fiber Neuropathy”, and found another range of articles. All just as confusing as the first, but they all stated the same thing – the small fibers affect both sensory and autonomic nerves, and most all recommended the group of tests that were described in the article about the Autonomic Testing Lab.
I just had to get referred to that lab. My efforts to get that referral started the most frustrating year I have had since the onset of neuropathy. But, I have only myself to blame. I made a decision that would cost me nearly a year before diagnosis, and put me in touch with one of the most arrogant and uncaring doctors I have ever encountered.
http://neuropathystory.wordpress.com/my-story/the-wait-is-over/
By Pati Gerrard
The wait is over
Well, not quite over yet – but will be by the end of 2008.
A lot happened during 2008, beginning with my determination to get to the root of the problem. I started with internet searches. Doctor K had always been open to running lab tests I happened to see recommended in articles. So, I thought instead of just giving him a list of my recent symptoms, I could also show him the articles I had found.
I tried several searches for SFN combined with some of my more recent symptoms like lower back pain, fatigue, balance, concentration, memory, bladder, etc. In four short months my list of symptoms had really grown. I have always kept copies of my lab tests, so combined the searches with any abnormal results.
I kept saving articles that were possible maybes, but there were none I could call THE ARTICLE. You know – THE ARTICLE that would describe all of my new symptoms wrapped up in one neat package of symptoms, diagnosis and treatment. It just wasn’t there.
One article from a local paper kept creeping up in the Google searches, but I had ignored it – after all, what would a local paper have that could answer my burning questions. So, when Google suggested it for the umpteenth time, I finally opened the page and started to read. It was titled “Exposed Nerves”, and was about a diagnostic testing lab that had recently opened at one of the local hospitals. Evidently Google thought it required reading, so I decided to oblige.
The lab it described was an Autonomic Testing Lab, and the article began with: “Although their tests have come back normal, their problems persist. Sometimes, they are even told that their symptoms might be tied to a psychological condition rather than a physiological one. For those with diseases of the autonomic nervous system, pinpointing their exact problem can be very difficult. “
I didn’t think my PN was related to the autonomic nervous system, but Google had my attention.
Then, there IT was – about halfway down the middle column were listed the 5 disorders tested. Second in the list was (drum roll) Small Fiber Peripheral Neuropathy, followed by the stated purpose of the tests:
- Detect the presence of an autonomic disorder
- Quantify the severity of the abnormality or disorder.
- Determine the distribution of the disorder.
(Does it involve the heart, brain and extremities?)
- Pinpoint the main site of the abnormality.
- Grade the degree of autonomic failure if present
The article ended with: “…95 percent of the patients we test have tests that are abnormal… This is perhaps not surprising considering most of these patients have been through a battery of other tests before being referred to the lab.”
This was IT. This was THE ARTICLE. Oh, Google, though art god among search engines. I will never question your advice again.
Armed with new information, I now started a search of “autonomic disorders”. Google suggested ‘Autonomic Nervous System Disorders’, ‘Autonomic Neuropathy’ and ‘Dysautonomia’. By now I trusted Google, and started through the myriad of articles related to Google’s suggestions. Further investigation showed the terms to be synonymous. Damn Google is smart.
The more I read about Autonomic Neuropathy, the more convinced I was that our nervous system, whether peripheral or autonomic is terribly confused. The NIH description of autonomic neuropathy follows in part, and will sound very familiar to other PNers:
Your autonomic nervous system is the part of your nervous system that controls involuntary actions, such as the beating of your heart and the widening or narrowing of your blood vessels. When something goes wrong in this system, it can cause serious problems… Autonomic nervous system disorders can occur alone or as the result of another disease… Problems can affect either part of the system, as in complex regional pain syndromes, or all of the system. Some types are temporary, but many worsen over time… Some autonomic nervous system disorders get better when an underlying disease is treated. Often, however, there is no cure. In that case, the goal of treatment is to improve symptoms
If you substituted ‘autonomic nervous system’ with ‘peripheral or somatic nervous system’, and ‘involuntary actions’ with ‘sensory/motor functions’, you would be describing the difficulties with diagnosing PN. And from what I read, it is just as difficult to diagnose autonomic dysfunction.
The symptoms for autonomic dysfunction/neuropathy are as varied as the symptoms for peripheral neuropathy, and I didn’t have all of them any more than I have all the symptoms of PN, but I had a good number of the symptoms, even symptoms like IBS and dry eyes and mouth that I hadn’t thought of as an actual symptom of anything.
This was all confusing. If my neuropathy was Small Fiber Peripheral, how could I also have symptoms of Autonomic Neuropathy? So I expanded my search to “Autonomic Small Fiber Neuropathy”, and found another range of articles. All just as confusing as the first, but they all stated the same thing – the small fibers affect both sensory and autonomic nerves, and most all recommended the group of tests that were described in the article about the Autonomic Testing Lab.
I just had to get referred to that lab. My efforts to get that referral started the most frustrating year I have had since the onset of neuropathy. But, I have only myself to blame. I made a decision that would cost me nearly a year before diagnosis, and put me in touch with one of the most arrogant and uncaring doctors I have ever encountered.
http://neuropathystory.wordpress.com/my-story/the-wait-is-over/
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