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.

@samcal9977zz

In 2011, my wife's 80 year old father was dying of brain cancer.

- They left him, on a gurney, in a hallway, for 48 hours!!!

- They mailed him the wrong cancer medication!!!

- They did not put up the hospital bed rails and he fell out of bed twice. The second fall was the end, it cascaded him into death.

- I spoke with a lawyer. He said it was extremely hard to win cases against doctors and hospitals. He said engaging with a case could easily cost me $400,000 and there was no real assurance we would win.

The system is completely corrupt.

Everyone associated with my father-in-laws care should have gone to prison and still be there.

Many, many, many doctors and other officials have testified before Congress about these kinds of abuses. Nothing gets done. I don't have proof that some politicians are being paid off, but I certainly assume that is the case.

I used to work as a bookkeeper in a funeral home. One time, right out of the blue, one of the funeral directors told me this story:

He said that he used to work as a rep for a major drug company. He said that he and all the other reps used to get together and laugh about how little bribe money it took for them to get doctors to prescribe the drugs they wanted, that they were selling.

Clear out of the blue he said this to me. I think he must have wanted to unburden himself from the guilt?

But, yes, that is near verbatim what he said to me. And hardly the only example of the deep corruption that exists....and not only in medical care. Clear across the board.

From what I can see, Congress has just stopped regulating industry much at all and now they get away with murder...sometimes literally.

Jump to this post

I had a good friend that worked as a recruiter placing doctors . She had an orthopedic group as a client, which was always complaining to her that her placements weren’t “ booking” enough surgeries. Success at this facility centered around exceeding the minimum number of required surgeries.
Orthopedic surgeons were let go if they didn’t book enough surgeries. My friend reported this practice. These people should have lost their license to practice medicine, but no, to this day they are still in business.

REPLY
@kensiejames

I had a good friend that worked as a recruiter placing doctors . She had an orthopedic group as a client, which was always complaining to her that her placements weren’t “ booking” enough surgeries. Success at this facility centered around exceeding the minimum number of required surgeries.
Orthopedic surgeons were let go if they didn’t book enough surgeries. My friend reported this practice. These people should have lost their license to practice medicine, but no, to this day they are still in business.

Jump to this post

I can believe it. My orthopedic surgeon appealed to the Board of Anesthesia for that doctor to loose his license. He has taken care of me since 2010. He has never had problems with me and anesthesia. It scared me so bad what gave that anesthesiologist the right to do that. It happened in October still upsets me. I have an autoimmune disorder and there’s times where I can’t put any weight on my hip. He did my right hip first that’s where they overdosed me and for the left hip it was done at a different facility and no problems in and out of recovery in 30 minutes.

REPLY
@artemis1886

Just how many different types of neuropathy can one person have?
CAN- cardiac autonomic neuropathy
Severe axonal sensorimotor peripheral
polyneuropathy
Small fiber Neuropathy
Dysautonomia Neuropathy
What’s next?

Jump to this post

If you get an answer to your question please post. Many people have the same question. Thanks

REPLY
@artemis1886

Just how many different types of neuropathy can one person have?
CAN- cardiac autonomic neuropathy
Severe axonal sensorimotor peripheral
polyneuropathy
Small fiber Neuropathy
Dysautonomia Neuropathy
What’s next?

Jump to this post

I'm not sure anyone can really answer the question with specifics due to the complexity and range of symptoms and causes. Some of your questions are discussed in this John Hopkins reference.

"There are more than 100 types of peripheral neuropathy, each with its own set of symptoms and prognosis. Peripheral neuropathy has many different causes."
"Can you have multiple types of neuropathy?
Damage to these nerves can be serious. Combination neuropathies. You may have a mix of 2 or 3 of these other types of neuropathies, such as a sensory-motor neuropathy."
--- Peripheral Neuropathy: https://www.hopkinsmedicine.org/health/conditions-and-diseases/peripheral-neuropathy

REPLY
@artemis1886

Just how many different types of neuropathy can one person have?
CAN- cardiac autonomic neuropathy
Severe axonal sensorimotor peripheral
polyneuropathy
Small fiber Neuropathy
Dysautonomia Neuropathy
What’s next?

Jump to this post

Hi @artemis1886, Thanks for the private message. I'm sure you are not alone when comes to feeling you are getting all kinds of neuropathies. When new or different symptoms pop up often that's what I start thinking myself - what's going on now. Your question about a service or support dog is a good one and I'm sure you are not the only one that has thought about getting or needing one. Here are a couple of discussions that are not in the Neuropathy support group but that you still might find interesting if not helpful:

--- Training or Getting a Service Dog: https://connect.mayoclinic.org/discussion/service-dog/
--- The value of an animal: https://connect.mayoclinic.org/discussion/the-value-of-an-animal/

REPLY
@artemis1886

Just how many different types of neuropathy can one person have?
CAN- cardiac autonomic neuropathy
Severe axonal sensorimotor peripheral
polyneuropathy
Small fiber Neuropathy
Dysautonomia Neuropathy
What’s next?

Jump to this post

There is CIN-chemo-induced neuropathy. I doctors said it would go away after cancer treatment, but a year and a half out from treatment, I still have neuropathy in my feet, toes, hands and fingers and balance is not good. I have a strong margin for falling and/or bone fractures. I am 83 years old so this is not good. Started Fosamax and had terrible stomach pain, and bone pain in my legs. I stopped this and going to discuss with primary about what to do next. Also, tried anti-cancer drug IV and after third treatment neuropathy got so bad I could not sleep due to both pain and tingling. I stopped treatment and decided not to do Tamoxifen, also because of side affects. Everyone has to decide what is best for them I guess.

REPLY
@artemis1886

Just how many different types of neuropathy can one person have?
CAN- cardiac autonomic neuropathy
Severe axonal sensorimotor peripheral
polyneuropathy
Small fiber Neuropathy
Dysautonomia Neuropathy
What’s next?

Jump to this post

Bone builders are tough on you. I tried them all but one hurt less that the others. The insurance would not cover that one. I had avascular necrosis ( the bone does lack of blood flow then the bone collapses) along with osteoporosis. Bottom line my doctor ( orthopedic surgeon) said I had a choice keep breaking bones or take something to strengthen them where they would not break so easily. I had three left hip replacements and an actebulum fracture in one year. I had to buck it up and endure the pain for two years.
I was 36 and now 61.

REPLY
@artemis1886

Just how many different types of neuropathy can one person have?
CAN- cardiac autonomic neuropathy
Severe axonal sensorimotor peripheral
polyneuropathy
Small fiber Neuropathy
Dysautonomia Neuropathy
What’s next?

Jump to this post

Has anyone tried nooro pads?
Barb

REPLY
@bkfoster1

Has anyone tried nooro pads?
Barb

Jump to this post

Hi Barb, @mannyk, @mlovette, and @delia74 have talked about the Nooro device as well as discomfort in their feet from neuropathy and may have more to share.

REPLY
@artemis1886

Just how many different types of neuropathy can one person have?
CAN- cardiac autonomic neuropathy
Severe axonal sensorimotor peripheral
polyneuropathy
Small fiber Neuropathy
Dysautonomia Neuropathy
What’s next?

Jump to this post

Although I have NOT used nor commented about the Nooro device, I have indeed been coping with neuro pain in my feet (other areas as well!). I was always told by many doctors that the pain was not due to diabetes, but no one could identify the source either...
Yes, John, I have tried various "self remedies" in my quest for at least some relief, and you are correct that I've responded to members postings about their respective pain and quest for relief. I am still on that journey!

Would be happy to address members' questions. Perhaps they will find a nugget of comfort by trying to implement strategies that I've tried over the years, or at least find reassurance in connecting that they are not alone, not imagining what they feel, and that they need to best advocate for themselves.

As for the Nooro device, I did search for info (a few months ago) and decided against purchasing/incorporating it in my self-care.

REPLY
Please sign in or register to post a reply.