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Old 04-17-2015, 10:59 AM #21
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The first neuro was horrible. He had me walk a bit, did some strength testing, reflexes etc. said nothing showed up in his clinical exam so there is nothing wrong. whatever is happening will go away. NO testing, no bloodwork, no emg, mri NOTHING. I went back 6 months later when this had not gone away. By this point, I had mri, emg, some bloodwork. Of course nothing comes up. This time he didn't even do a clinical. Just looked at the results of the testing my primary had done and prescribed Cymbalta even though "there's nothing wrong". he referred me to a second neuro for another opinion. She agrees nothing wrong, but after fighting with her she agreed to send me for a skin biopsy but wouldn't recommend it as needed so my insurance won't cover it. I have to pay $2000us for the test.
When I read this my blood started to boil, since it sounds so similar to what I have been going through (although fortunately I haven't been at the level of pain you have described). If they can't find any symptoms that can be physically observed, they conclude that nothing is wrong. Unfortunately, there's no way to measure the pain someone is feeling - which is the main symptom many of us experience.

It's too bad insurance won't pay for your biopsy since it's "not necessary". Any chance they'll pay for it if the results come back and show a problem - proving that it was in fact needed? Yeah, right.................

I hope you find some relief soon.
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Old 04-17-2015, 11:08 AM #22
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That's pretty crappy for your neuro to say "there's nothing wrong". My neuro agrees there's something causing my symptoms but he has the humility to say "I don't know what's causing it".
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Old 04-17-2015, 11:20 AM #23
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The first neuro was horrible. He had me walk a bit, did some strength testing, reflexes etc. said nothing showed up in his clinical exam so there is nothing wrong. whatever is happening will go away. NO testing, no bloodwork, no emg, mri NOTHING. I went back 6 months later when this had not gone away. By this point, I had mri, emg, some bloodwork. Of course nothing comes up. This time he didn't even do a clinical. Just looked at the results of the testing my primary had done and prescribed Cymbalta even though "there's nothing wrong". he referred me to a second neuro for another opinion. She agrees nothing wrong, but after fighting with her she agreed to send me for a skin biopsy but wouldn't recommend it as needed so my insurance won't cover it. I have to pay $2000us for the test.

Mainly, you need to have someone you can trust and who is NOT narcissistic, ignorant, and mean from what you have shared.

I suggest talking to some folks in your geographic area. It may be hard to find a NeuroMuscular Neurologist. Is there anyone in your group of family, neighbors, or friends who have a good Neurologist?
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Old 04-17-2015, 11:32 AM #24
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i suggest talking to some folks in your geographic area. It may be hard to find a NeuroMuscular Neurologist. Is there anyone in your group of family, neighbors, or friends who have a good Neurologist?[/QUOTE]

No, I don't know anybody who is sick! the neuro that did agree to the skin biopsy is a neuromuscular neurologist at one of the best hospitals in my area. Mind you we don't have many hospitals....
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Old 04-17-2015, 11:37 AM #25
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i suggest talking to some folks in your geographic area. It may be hard to find a NeuroMuscular Neurologist. Is there anyone in your group of family, neighbors, or friends who have a good Neurologist?


No, I don't know anybody who is sick! the neuro that did agree to the skin biopsy is a neuromuscular neurologist at one of the best hospitals in my area. Mind you we don't have many hospitals....[/QUOTE]


Where do you live?


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Old 04-17-2015, 12:15 PM #26
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No, I don't know anybody who is sick! the neuro that did agree to the skin biopsy is a neuromuscular neurologist at one of the best hospitals in my area. Mind you we don't have many hospitals....
If it makes you feel any better, I didn't get a skin biopsy. My neuro said it was an option, but said he was sure I had SFN, and all the biopsy would do is confirm it. It wouldn't help with the cause.

I know it can help mark progression, but I certainly don't want to keep getting them if they're still not going to tell me why. I'm sure I'll be able to tell if it gets worse.
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Old 04-17-2015, 12:34 PM #27
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Yes, Neurologists who are knowledgeable and helpful will diagnose. SFN can be diagnosed on exam alone. From my experience and what I have read, most doctors will not do this, as now they want objective evidence.

The NM doctor is doing you a disservice by not saying the biopsy is not medically necessary. If your symptoms persist, then a skin biopsy is appropriate. Your treatment might be the same, but the way you are treated (talked to, listened to) would change.

You may already know about these, but these are good links to share:

http://www.hopkinsmedicine.org/neuro...europathy.html

https://www.therapath.com/tests/skin...ber-neuropathy

Big teaching places like the sweat test, QSART, etc. This brings in big money. A skin biopsy take a few minutes, but with labeling, sending out etc., there is not much charge (if insurance will cover).

Good luck!
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Old 04-17-2015, 12:45 PM #28
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Positive skin biopsy test = It's not "all in your head"
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Old 04-17-2015, 01:10 PM #29
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I wonder if the biopsy comes back positive, whether you could argue that it was necessary...so insurance will pay. I'm probably wrong, but it doesn't hurt to ask the doctor to re-code his chart.

Baba is correct that there are some doctors that will Dx based upon symptoms, but, trust me, those patients will have very difficult time getting any high dollar treatments approved without documentation.
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Old 04-17-2015, 01:32 PM #30
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Hi guys,

I know everyone wants me to calm down (I want that too). But the pain is sooo excruciating I can't function another minute. I need relief NOW, I am going to the ER, what should I ask for?

THANKS
I know that you have already made the trip and I hope you are better. Going to the ER and asking for anything is a short path to a Tylenol and a kick back into the parking lot. IMHO the chain of command is the ER gets you through the night. If your lucky, to your next appt w/primary. Your primary will decide if you are a candidate for Pain Management. Only in PM will you have access to meds that have real theraputic power. Even then these guys have it all figured out pretty good. Your relief may never reach the level you want. You remember the commercial where the guy sits in front of the big speaker with a glass of wine in his hand and the speaker is blowing his hair back? Not going to happen. Just a suggestion, don't tell your primary that pain is driving you to depression. Don't use the word, let him use it. There are many clinical markers for depression and if he is any good, he will be trying to make up his own mind. If you feel like slinging snot and screaming then sling snot and scream. Honest feelings and real-life conditions in your home. Please don't sling snot and scream, I was trying to make a point. I don't know of anyone that has leap-frogged the chain of command. Good Luck, Ken in Texas.
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