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Neuropathy: My Journey
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
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I hate it when I have such high hopes for medical visit, hoping the physician has read my history and come up with a plan just for my particular case. Then to sit there and realize they are quickly skimming my medical records for the first time. So deflating.
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5 ReactionsMy oncologist stinks! I asked the office if he could let me know the results of my upcoming petscan before I go in for my appt a week later so I don't have to wait but he can't. He will be out of the office after my scan but will be back for my appt. My appt is on a Wednesday in February.
He's never available when I call or send a message with a question on the patient portal.
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2 ReactionsIn 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.
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1 ReactionWe have a healthcare system over whelmed by people. Prior to Obama care there was a very large segment of our population that could not afford healthcare insurance. Since Obama care began we have been unable to train up docs, NP’s, PA’s to meet the demand. Prior we had ample time to spend with our doc visits. Now for docs it’s time equals money. Even in small practices you have maybe 15 minutes to spend in a visit. It’s not a social call and shouldn’t be treated as such. Many of us need to readjust our expectations and be thankful we have availability to healthcare, maybe not at the level you just want.
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2 ReactionsI agree 100%. Try telling that to someone in excruciating pain, who is told, "We'll see you back in two months for a follow up". I'm surprised that ERs aren't overwhelmed by folks try to get somekind of help for their pain. Did you see the neurologist who spent an hour and a half on my first consultation? Every followup was at least 30 minutes, sometimes forty-five. She had not yet yielded to the big Medical Group take over.
I hope for your sake she can maintain that schedule.
I would also like a he name of the cream. Please, what is it?
There is not a name for it. It is prescribed as a pain cream. It is compounded by a pharmacy. If you give the neurologist the information they should know how to prescribe it. It has a long acting drug in it similar to novocaine
The percentages I listed is how mine is compounded. The neurologist just calls it a pain cream. He calls the prescription in when I need I need it refilled. There’s no name on the prescription just precentages and the name of the drugs. .
Some of the people here asked if I keep having to go to Boston. Dr. Anne Oaklander practices in three other states but not Texas. Here are the other states Fl, NH, and MA. She asked that I follow up with her every six months to a year. So she can follow me for her research.
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?