Neuropathy: My Journey

Posted by artemis1886 @artemis1886, Nov 5, 2023

I have a question. Have any of you with small fiber neuropathy along with severe axonal sensorimotor polyneuropathy have these problems after being diagnosed?
2015 diagnosed with the polyneuropathies
2020 diagnosed with hypothyroidism (can cause neuropathy but
I was diagnosed with neuropathy first) thyroid was fine
Cysts and tumor on thyroid
2023 doing testing for diabetes first time glucose levels elevated
found cysts on pancreas A1C level 5.7 glucose 103
Yes that was fasting.
Has anyone had these problems after being diagnosed with neuropathy?
They do not know the etiology (cause) of mine!
University of Boston research neurology is starting testing on me for genetics

Interested in more discussions like this? Go to the Neuropathy Support Group.

@artemis1886

I just sent Dr Oaklander the additional information. She is not going to help me find all the people she recommended. I am so frustrated. I kinda had a melt down when she said I was on my own since I live in Texas. I am ready to move to another state.

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sorry about the problems. I remember getting medical treatment in the 60s and 70s when doctors were nice, concerned, caring and helpful.

Those days seem long gone.

Shame on these people.

We live in pain and they choose THAT time to be callous to us. Utterly shameful.

I hope that you can find the help you need.

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@samcal9977zz

sorry about the problems. I remember getting medical treatment in the 60s and 70s when doctors were nice, concerned, caring and helpful.

Those days seem long gone.

Shame on these people.

We live in pain and they choose THAT time to be callous to us. Utterly shameful.

I hope that you can find the help you need.

Jump to this post

Medical professionals today usually belong to some kind of huge medical corporation. Said group often has a policy for their doctors to spend no more than "X" minutes with any one patient so the assembly line can continue spewing out dissatisfied patients. You need to find a doctor who is an independent practitioner (I know, good luck with that). I went to a neurologist a few years back who had her own, private practice. She was originally from Romania and had seen what socialized medicine had done to patient care there.
During my first session with her, she spent an hour and a half with me (you heard me right...90 minutes!), having me do this and that, all the while writing down notes on a yellow legal pad. At the end of our session, she prescribed a couple of meds for my lower back pain that eventually made my life bearable again. How many of you out there have a doctor who really gets to know your real medical history, let alone getting to know you as a person? How can you really treat someone in fifteen minutes? Unfortunately, we have become a nation of socialized medicine, whether we want to admit it or not.

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@artemis1886

I just sent Dr Oaklander the additional information. She is not going to help me find all the people she recommended. I am so frustrated. I kinda had a melt down when she said I was on my own since I live in Texas. I am ready to move to another state.

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Anybody have positive results from the Spinal Cord Stimulator implant?

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@heisenberg34

Medical professionals today usually belong to some kind of huge medical corporation. Said group often has a policy for their doctors to spend no more than "X" minutes with any one patient so the assembly line can continue spewing out dissatisfied patients. You need to find a doctor who is an independent practitioner (I know, good luck with that). I went to a neurologist a few years back who had her own, private practice. She was originally from Romania and had seen what socialized medicine had done to patient care there.
During my first session with her, she spent an hour and a half with me (you heard me right...90 minutes!), having me do this and that, all the while writing down notes on a yellow legal pad. At the end of our session, she prescribed a couple of meds for my lower back pain that eventually made my life bearable again. How many of you out there have a doctor who really gets to know your real medical history, let alone getting to know you as a person? How can you really treat someone in fifteen minutes? Unfortunately, we have become a nation of socialized medicine, whether we want to admit it or not.

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High priced socialized medicine.
Flight to Boston to nights in hotel food was ever expensive. She spent 30 minutes with me and really did not know my medical information. Had not reviewed what was sent in. Then said she would get the person she trained in Houston to get with me. She is claiming she did not say that but both my husband and I both heard it. My neurologist since 2002 passed away in 2022. I have not had any luck they just tell me to come back once a year. I have progressed really bad the past year.

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@heisenberg34

Medical professionals today usually belong to some kind of huge medical corporation. Said group often has a policy for their doctors to spend no more than "X" minutes with any one patient so the assembly line can continue spewing out dissatisfied patients. You need to find a doctor who is an independent practitioner (I know, good luck with that). I went to a neurologist a few years back who had her own, private practice. She was originally from Romania and had seen what socialized medicine had done to patient care there.
During my first session with her, she spent an hour and a half with me (you heard me right...90 minutes!), having me do this and that, all the while writing down notes on a yellow legal pad. At the end of our session, she prescribed a couple of meds for my lower back pain that eventually made my life bearable again. How many of you out there have a doctor who really gets to know your real medical history, let alone getting to know you as a person? How can you really treat someone in fifteen minutes? Unfortunately, we have become a nation of socialized medicine, whether we want to admit it or not.

Jump to this post

Big Breaking Bad fan, eh?

Or, well, hopefully not a fan of the cartel and drug dealers...

If you are from the cartel, please let me know where I can get the cool narco music. I love that stuff.

We have corporate medicine, not socialized medicine. We have the opposite of socialized medicine.

Here's a clip from Jim Carrey, a Canadian, talking about health care in Canada, beyond the lies that the HMOs and their PR team want to spin:

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@artemis1886

High priced socialized medicine.
Flight to Boston to nights in hotel food was ever expensive. She spent 30 minutes with me and really did not know my medical information. Had not reviewed what was sent in. Then said she would get the person she trained in Houston to get with me. She is claiming she did not say that but both my husband and I both heard it. My neurologist since 2002 passed away in 2022. I have not had any luck they just tell me to come back once a year. I have progressed really bad the past year.

Jump to this post

We have corporate medicine, the opposite of socialized medicine.

REPLY
@samcal9977zz

Big Breaking Bad fan, eh?

Or, well, hopefully not a fan of the cartel and drug dealers...

If you are from the cartel, please let me know where I can get the cool narco music. I love that stuff.

We have corporate medicine, not socialized medicine. We have the opposite of socialized medicine.

Here's a clip from Jim Carrey, a Canadian, talking about health care in Canada, beyond the lies that the HMOs and their PR team want to spin:

Jump to this post

I am completely aware that we do not have socialized medicine. That was sarcasm. As far as Jim Carrey goes, I can’t hold him up as a beacon of truth and light.

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@julkun

Anybody have positive results from the Spinal Cord Stimulator implant?

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We talked about it but I do not qualify. Due to my balance issues and when I fall. I always fall on my back. I was told it could puncture my spinal column causing a lot of problems. I just feel Jan 2&4. Walking down steps fell backwards logically I should have fallen forward. I walk with two crutches that rap around my arms.

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@artemis1886

I just sent Dr Oaklander the additional information. She is not going to help me find all the people she recommended. I am so frustrated. I kinda had a melt down when she said I was on my own since I live in Texas. I am ready to move to another state.

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Thanks for responding. So sorry to hear about your balance problem and I can understand your concern. I am wondering if you had a spinal cord stimulator implant, maybe your balance might improve significantly. I am just thinking of the pain, and I totally understand where you are coming from. I pray for your health and happiness.

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@julkun

Thanks for responding. So sorry to hear about your balance problem and I can understand your concern. I am wondering if you had a spinal cord stimulator implant, maybe your balance might improve significantly. I am just thinking of the pain, and I totally understand where you are coming from. I pray for your health and happiness.

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I also have seizures. That also causes my falls. I fell Jan 2 and 4.
Due to the neuropathy then after hitting my head I had a seizure.

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