Who else has Autonomic Neuropathy?

Hi Iceblue,

That's another thing about the neurologist I've seen for 4 years. He has done a lot of testing but he's never told me what the tests are for. I recognize Lyme tests by name but not the other tests.

I saw a rheumatologist 20 years ago when I had unremitting tailbone pain in addition to the other symptoms which were waxing and waning at that time but my focus was on my tailbone. I'll never forget when he told me in a 'disgusted' way, 'oh, you have chronic pain' like I chose to have it. He put me on Neurontin and Flexeril. I never saw him again because of his attitude and it was a long drive to his office. My 'friendly' primary care doc refilled my prescriptions for years and never once asked how things were going with the meds.

When I had my 'heart attack' 3.5 years ago, initial blood work indicated this but a catheterization procedure did not confirm, it resulted in a referral to a cardiologist. By this time, I was seeing my concierge doc who referred me to a PA because all the cardiologists were booked for months. She looked at testing which had been done (this by my neurologist) and said; "Oh, I see you have Lupus". My mother had systemic Lupus and RA. I knew there was something wrong like lack of confirming evidence since my neurologist did not communicate this with me, but in the meantime, I self-referred myself to a rheumatologist to see if there was something there that could explain all my pain with migrating, waxing and waning symptoms etc. I made the mistake of explaining to this Indian doctor that my primary care doc of 18-20 years must have thought that I was a hypochondriac because when he got ill and I saw his partner for a while before transferring to the concierge doc, he more or less communicated this. The Indian rheumatologist wanted to do more blood work but I asked if he could not get all the testing done recently by my neurologist. His staff said they could not access it and then he quickly explained that my joints seemed normal and that the mind can create these pain experiences.

Long story short, I finally saw a cardiologist who explained he thought my heart event was not an attack but a stress-related event. I know my pain was worsening and my concierge doctor friend was getting frustrated so I switched to a new primary care doc. I don't recall what prompted my self-referral to the Indian doctor's colleague, a Philippine rheumatologist, but I made the appointment and had to 'verbally fight' to get testing done. This doctor wanted to know why I was there. He told me my symptoms were not in his specialty area. He kept interrupting me. He told me I wouldn't take any of his drugs if he found anything. (No telling what was in all my doctor's notes by this time) After a good 30 minutes of verbal jousting, he consented to do a full workup. He withdrew a lot of blood. When I returned for the results conference, I waited while the entire waiting room emptied. After 40 minutes, I was directed to a body width room, a closet of sorts. I was not given a reason as to why the doctor was delayed. I waited another 40 minutes and then asked for a refund of my copay.

My new concierge doc referred me to a 'specialist' of sorts who was supposed to be able to help me with my osteopenia (I got a compression fracture picking up my dog..something I used to do all the time when he was 15lbs heavier with 4 legs). I did get the Philippine doc to fax my results to this doctor who looked at it and said he didn't know what it means but that I should see someone because it looked significant.
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So after my biopsy with my neurologist confirmed I had SFN which resulted in a brief conference in his waiting room, and the subsequent e-consult with Mayo and then a self-referral to Emory who advertised they took a multi-disciplinary approach to the diagnosis and treatment of PN, I was told; "Why don't you just go home and die" by the Ukranian neurologist. I asked if I should see their gastroenterologist or rheumatologist and she said no. There was no explanation involved at all.

I concluded that there must be some really bad stuff in my file for a doctor to respond in this way. As mentioned, I worked with doctors all my professional life and this was just beyond the pale. So this is where I'm at. I've had a lot of testing done but I have no idea what for and what the results imply. I'm more or less resigned to the fact that this is my fate and I pray I outlive my dog so that I can take care of him. After he's gone, I'll do the intelligent thing... having explored options from many viewpoints. I'm 72. Stuff happens and we leave the stage. I think I've exhausted all the medical resources I'm going to be able to use. I did google 'blackballing or black listing' by doctors and it's a real thing. Somehow I've worked my way onto this list.

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Hi Iceblue,

That's another thing about the neurologist I've seen for 4 years. He has done a lot of testing but he's never told me what the tests are for. I recognize Lyme tests by name but not the other tests.

I saw a rheumatologist 20 years ago when I had unremitting tailbone pain in addition to the other symptoms which were waxing and waning at that time but my focus was on my tailbone. I'll never forget when he told me in a 'disgusted' way, 'oh, you have chronic pain' like I chose to have it. He put me on Neurontin and Flexeril. I never saw him again because of his attitude and it was a long drive to his office. My 'friendly' primary care doc refilled my prescriptions for years and never once asked how things were going with the meds.

When I had my 'heart attack' 3.5 years ago, initial blood work indicated this but a catheterization procedure did not confirm, it resulted in a referral to a cardiologist. By this time, I was seeing my concierge doc who referred me to a PA because all the cardiologists were booked for months. She looked at testing which had been done (this by my neurologist) and said; "Oh, I see you have Lupus". My mother had systemic Lupus and RA. I knew there was something wrong like lack of confirming evidence since my neurologist did not communicate this with me, but in the meantime, I self-referred myself to a rheumatologist to see if there was something there that could explain all my pain with migrating, waxing and waning symptoms etc. I made the mistake of explaining to this Indian doctor that my primary care doc of 18-20 years must have thought that I was a hypochondriac because when he got ill and I saw his partner for a while before transferring to the concierge doc, he more or less communicated this. The Indian rheumatologist wanted to do more blood work but I asked if he could not get all the testing done recently by my neurologist. His staff said they could not access it and then he quickly explained that my joints seemed normal and that the mind can create these pain experiences.

Long story short, I finally saw a cardiologist who explained he thought my heart event was not an attack but a stress-related event. I know my pain was worsening and my concierge doctor friend was getting frustrated so I switched to a new primary care doc. I don't recall what prompted my self-referral to the Indian doctor's colleague, a Philippine rheumatologist, but I made the appointment and had to 'verbally fight' to get testing done. This doctor wanted to know why I was there. He told me my symptoms were not in his specialty area. He kept interrupting me. He told me I wouldn't take any of his drugs if he found anything. (No telling what was in all my doctor's notes by this time) After a good 30 minutes of verbal jousting, he consented to do a full workup. He withdrew a lot of blood. When I returned for the results conference, I waited while the entire waiting room emptied. After 40 minutes, I was directed to a body width room, a closet of sorts. I was not given a reason as to why the doctor was delayed. I waited another 40 minutes and then asked for a refund of my copay.

My new concierge doc referred me to a 'specialist' of sorts who was supposed to be able to help me with my osteopenia (I got a compression fracture picking up my dog..something I used to do all the time when he was 15lbs heavier with 4 legs). I did get the Philippine doc to fax my results to this doctor who looked at it and said he didn't know what it means but that I should see someone because it looked significant.
[
So after my biopsy with my neurologist confirmed I had SFN which resulted in a brief conference in his waiting room, and the subsequent e-consult with Mayo and then a self-referral to Emory who advertised they took a multi-disciplinary approach to the diagnosis and treatment of PN, I was told; "Why don't you just go home and die" by the Ukranian neurologist. I asked if I should see their gastroenterologist or rheumatologist and she said no. There was no explanation involved at all.

I concluded that there must be some really bad stuff in my file for a doctor to respond in this way. As mentioned, I worked with doctors all my professional life and this was just beyond the pale. So this is where I'm at. I've had a lot of testing done but I have no idea what for and what the results imply. I'm more or less resigned to the fact that this is my fate and I pray I outlive my dog so that I can take care of him. After he's gone, I'll do the intelligent thing... having explored options from many viewpoints. I'm 72. Stuff happens and we leave the stage. I think I've exhausted all the medical resources I'm going to be able to use. I did google 'blackballing or black listing' by doctors and it's a real thing. Somehow I've worked my way onto this list.

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@jager5210 Is it not true that the patient must be given a copy of his record?

Jim

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It's been 13 years since I practiced as a licensed psychologist. There used to be a difference between notes and records. Records were released upon request. Notes were private but could be obtained upon subpoena, thus, it was wise to be cautious about what one put in a file. With most records being electronic now, I don't know if there is a distinction. Maybe cautioning about a patient can be done in circuitous language/code, I don't know. I have no interest in suing anyone but I would like to track down any sort of bias that may be in my records and have a chance to respond.

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Jim @jimhd -- I'm pretty sure they have to provide copies of medical records but only to the patient when requested. Also, I'm pretty sure you may have to pay a processing fee to pull them all together and print them out. I had to do that when I was thinking of suing a doctor for a botched gall bladder surgery on my wife - not really suing just trying to recover the cost of the second surgery and hospitalization to fix the problem caused by the first surgery.

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I've had pn for around 10 years and it's gradually progressed from tingling in my feet and legs to burning pain, 6-9 on the pain scale. I've been blessed to have good care, doctors who explain things, good neurologists, PCP, pain specialist, orthopedists, PT, cardiologist, ophthalmologist, ENT, gastroenterologist, mental health professionals, swallow therapist, urologist - I might have missed some.

At the Oregon university hospital sfpn was verified and was told I'm in the early stage of AN, which helped me understand what's been going on with the various things that have sent me to all of the doctors on my list. I'm 69, so I expect to have ailments typical for getting older, but it can be hard to distinguish between the effects of aging and SFPN/AN.

Issues that could be chalked up to neuropathy (but I don't know): diplopia, dysphagia, reflux, esophageal dysmotility, uncoordinated motion in the back of my tongue, numbness in my face and fingers, legs and feet, sudden urgent urinary incontinence, sudden urgent bowel movements, uncontrolled movements of my fingers and other places, off and on blurred vision, memory and mental acuity slowing, random loss of muscle in my knee causing me to fall, staggering down the hall, knocking photos off the wall, feeling full after eating a small percentage of the meal, tinnitus, losing my senses of smell and taste, feeling like a zombie, ED, and burning pain moving upward from the bottom of my feet - now involves my ankles.

This is not how I lived the first 50 years of my life. Never took any medication except for Ibuprofen, always healthy, rarely had a cold or the flu. I feel like I'm falling apart from head to toe, quite literally.
And I continue to wonder how much is attributable to neuropathy. All the doctors say is that it might be. At least they don't tell me it's all in my head.

Jim

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