Neuropathic Pain
 

Hi everyone. I'm new here. My symptoms started about 2 years ago with numbness in my thighs when I stood still for any length of time. My doctor sent me to a rheumatologist who couldn't find any problems and told me it would just go away. Around a year ago the pain started. I went back to my doctor and he sent me to a neurologist. She ordered an MRI of my spine, which was normal, and then of my brain also normal. I then had an Electromyography (EMG) and nerve conduction study (NCS). These also were normal. I was told that all we could do was try and treat symptoms. I was on Neurotin, which didn't work. Pain, sensitivity and numbness got worse and spread into my feet. I went to Johns Hopkins University Neurology in Baltimore, MD and they ran another EMG/NCS and an MRI of my neck - all normal. The doctor sent some recommendations for 3 meds (Neurotin, Cymbalta, Lyrica) to try to my neurologist here in VA. Cymbalta worked fairly well at first later she had to added Lyrica. Hopkins ordered a battery of blood tests, 13 vials of blood - all came back normal. Hopkins then ordered a skin biopsy to test for small fiber neuropathy - normal also.

My DX is Polyneuropathy - Idopathic. Pain, numbness, sensitivity continues to get worse, especially at night. It is also spreading up my lower back. My neurologist referred me to the John Hopkins Blaustein Pain Treatment Center after saying that she didn't know what to do. I have an appointment, first available, in 5 weeks for an initial consultation. I hope I can still function by then.

I do feel very fortunate to be this close to Hopkins as it is one of the top rated medical centers in the country. However, it concerns me even the top hospital in the country doesn't know what is causing this or how to treat it. My fear is that if they can't treat the cause then the symptoms will just keep getting worse.

Anyway I've been reading the posts here and thought I'd share and see if anyone had any thoughts on my condition.

Hi there :)
 

Hi Hermes,
I see you've been finding your way around and have been posting here at the PN forum.
Not sure if anyone has mentioned, but clear at top of page is a VERY helpful section called 'PN tips and resources'....it may be of great help.....at least in gaining more understanding of what you are dealing with and may help you in asking Q's at your John Hopkins appt.

I hope that appointment proves very beneficial and I wish you the best.
Please let us know what you find out k.
Others will be along for support

Glad you came over here to this forum. I saw you at the New Members Intro's several days ago.

Caring
Rae
:hug:

Hi, Hermes -

As you say, even one of if not the best facility in the country hasn't been able to come up with a Dx for you.

Where is the program Mystery Diagnosis when we need them? Now wish I'd written down the causes of some of the diseases that program has presented. Stuff nobody would think of - but some docs did.

For whatever it might be worth - did JH do autonomic nervous system testing on you? Did they test for things like Guillain-Barre (not sure of spelling), Charcot-Marie-Tooth, hereditary neuropathies, etc.? Would think so. If not, though, you might ask if they are possibilities.

Good luck at your appointment, and try to hang in there. If you feel you're getting worse, though, don't hesitate to call and see if you can be fit into the schedule really soon.

Sheltiemom

A comprehensive list of all the tests for various neuropathies
can be found at www.lizajane.org.
You can use it as a checklist to see what you have
and have not been tested for.
I too, go to Hopkins- and at one time was referred to the pain clinic, by
a neuro who was taking my doc's patients when he was on surgical leave.
This neuro didn't have a clue (my neuro would've handled it differently)!
The pain clinic is run by the dept of anesthesiology.
They are 99% drug oriented and highly suspicious of everyone
as a habitual drug user and opiate addict.
They were not able to help me, and when my doc got back from sick leave,
we both worked out a better treatment for me.

I have had some autonomic symptoms - my neurologist sent me to a cardiologist for a tilt table test but he wouldn't do it. Says noone does anymore and insurance won't pay for it. If the problem - blood pressure drop when I stand (light headiness) gets worse I'm supposed to come back and he'll put me on some meds to see if it helps.

The guy I saw at JH specialized in MS and and transverse myelitis. Those were ruled out. I think he ordered test for all the other stuff also.

The doc I have an appointment with also does some Neurostimulation and I'd like to take less drugs so we'll see

they still do tilt table tests here in the nyc area

I had the tilt table test done at Mayo Clinic in MN.

Now my mood has changed.....
 

After reading Bob's description of the pain clinic at JH, my blood is once again boiling. :mad2: Being a health professional we were taught that the patient's pain IS what THEY say it is. People react differently to pain. I have had patients cry, laugh, talk a mile a minute, sleep and a whole host of other behaviors because they were in pain. Does it mean if you laugh, you can't be in pain? Shame on those folks at JH pain clinic for treating ANY patient in that manner. We also learned that people who are addicted to pain medication require higher doses of meds to treat their pain, you just don't tell them to suck it up and get on with their life. Dang it, that makes me mad. It is no wonder physicians are being sued for not treating pain appropriately and aggressively enough. You can bet if they are hurting, they will be treated, pulling out all of the stops, until their pain is under control. Sometimes I am embarassed to be associated with the medical profession. But here again, it goes back to being your own advocate. I tell them I want to discuss options, not just be "told" my options. They won't treat my family that way either. I will become their worst nightmare.......sorry for the rant!!

they are running scared from the DEA.

I agree!
 

Need not 'apologize' for the 'rant' :) I get very worked up about this issue also! And don't be 'embarrassed' by being associated with the medical profession! My hope is that MORE medical professionals such as yourself will be able to help get some changes made regarding what i truly believe to be 'discrimination'...
Sounds like Bob's pain clinic is the same as mine.....run by Anesthesiologist know-it-all 'Needle Jockies' who go against the VERY profession they are supposed to be HELPING!! :eek: Because they'd rather shove a 4-inch needle in a person's spine for the cost of half of Jay Leno's car collection as opposed to prescribing a PILL from an opiate plant that can be taken on an as-needed basis.....
I WAS TOLD I WOULD END UP IN REHAB IF I DIDN'T AGREE TO GET A $150,000
IMPLANT PUT IN MY SPINE TO CONTROL PAIN
GrrrrrrrRRRRR!

........... :confused: ...... my apologies to Jay Leno. I have nothing against your car collection dude.

It's a shame
 

It is a shame that people, here in the United States, continue to suffer in pain. As a country we do a p**s poor job at treating pain when we have SOOO many resources available to us. Many moons ago doctors use to use the excuse "I can't prescribe narcotics because I will get investigated by the DEA." It is called "proper documentation" folks. Do the work-up, document and treat the patient. There are cases now where payment is being withheld because the presence of pain and pain control were not addressed. Maybe if we did a better job, people would not be forced to control their pain using illegal resources. :Soapbox: OK...stepping down now. I guess in a perfect world we wouldn't even be having this conversation........and we would all be pain free!! Dream the dream. :hug:

Please don't step down!
 

By Golly! I wanna nominate YOU for our next president!

Echoe's is pretty much on target and it IS a crying shame!
I don't know who to be more peeved at.....the DEA cracking down in such an 'over the top' manner OR the Doctors who won't, like you say -DICTATE it in the med records.
The subject of suicide was brought up when I expressed my concern regarding the fact that a person can only take so much chronic pain....and HE (needle jockey) SAID "oh yeah, just last year i lost one of my patients, she took her life" and the way it rolled off his cuff made me want to SLAP him! Because she either couldn't afford or insurance wouldn't approve his $$$$$ techniques (not sure of the details) she ended her life.

I'm FAR from being a genius, but I do know that the suicide rate would be substantially LOWER if pain were better controlled without the patient having to feel like a pathetic drug-seeking lowlife to GET the pain control.
I saw with my own eyes here in my town......a friend of mine found her brother dead out in a shed, took his life because he just couldn't take one more day of the pain he was racked with. He had no insurance.
He was only in his early 50's.

In a way, either way you look at it,.....the street recreational drug user/addicts WIN. The DEA has cracked down so strongly because of these people (and they're STILL gonna find their 'fix'!)........this leaves us going thru hades to get adequate pain treatment.
Good Lord can we re-wind a bit here and remember that the hardest core drug was a standard ingredient in cough syrups and meds for anxiety-ridden young mothers in the great depression......but by golly it was taboo to have alcohol?
Not to get all political here, but MAN. Now, sllllllowly, cannibus is finally becoming 'ok' in the eyes of Gov't. (sort of), but that still doensn't really address pain in general. Some folks aren't holding their breath on this as a great cure for pain.
DEA may think they are 'saving lives' by the way they've got Dr's scared of their crackdowns.....but look how many suicides are being carried out?
Lives are being lost regardless.
Ok, i'll give you back your soapbox..... :o

One thing my dad thought me was to be your own advocate or have one when you deal with the medical profession. I was in a car accident when I was 17 and one of my docs, plastic surgeon, was planning to wire my jaw shut, I had broken it in the left TMJ joint. My parents insisted, to the neurosurgeon in charge of my treatment, that a jaw specialist be brought in. I remember my dad firing the plastic surgeon after that. He was a very effective advocate for my mom when she had cancer also. Most people don't think they can fire a doctor.

i went to a pain clinic here for steroid shots to cervical spine, ( big mistake pn pain wise), and they wanted me to agree to have anything i take for pain, only amitriptylene in my case, anyway to have it go through this one pharmacy with their approval and i wasnt even looking for or getting any narcotics off of the pain center. i fired them.

I too had a bad experience with a "pain management" doc. To make a long story short, she refused to prescribe any meds for me (I was only asking to try amitriptylene). I am certain that she was punishing me for not going along with their $$$$ group PT/OT/counseling program. Before I refused the program, she was talking about Methadone. After, it was "no, I don't think I will prescribe anything for you."

I fired her.

my gp gave me neurotin then sent me to the neurologist, Test all came back normal but A1c was 6. Now they gave me Lexepro. It wook 1 1/2 years to get to my hips. now it is in my arms across my chest and up to my chin. How do i find agood pain clinic or should i even try?

Well, it didn't work out so well for me, but I am thinking of trying another one. I've given up on finding the cause, but at 54, I'm not ready to resign myself to this level of pain for the rest of my life.

You could start by looking here: http://www.healthgrades.com/local-do...dicine-doctors

I'm assuming that your cornfield is somewhere in that area.

Yep, here is pain management.....

My rheumie tells me my IVIG isn't doing any good....says I have fibro....never mind hubby can smell last nites binge on her breath....

GI sees her say I have fibro.....cripes....now I need neurontin.

OK, I am on neurontin....still need the vicodin, but WTH, taking the neurontin....but running out of vicodin (small dose BTW)...keep in mind I am the person who took myself off fentanyl last year.

Neuro, thank God, ignores all the BS....if not for him, I would want to leave the planet.

Ok, so call the pharmacy, cuz THEY are the ones to fax the doc....I call on Wed. cuz I am going to run out of my vicodin over the HOLIDAY WEEKEND. Med not filled Thursday...Now mind you, it is DUE to be filled...no cheating, no week early...nope was a good girl.

OK, no call on Friday from Robopharmacist.....I get a call on Friday at 3:30 to drive to my docs office to sign a pain contract.

I say, 'What did I do wrong?'
Nice nurse says, "Nothing, every one has to sign them"
'Why?":mf_argue:
"Because the drug dealers are getting vicodin"
'I am not a drug dealer'.:Bang-Head:
"Well you have to sign this"
"I can't get there....I have an infant, it is late"
"Well, then you can't have your vicodin"
"Fine, I will die with my dignity":Soapbox:

OK, so I opt for dignity and wait until my doc appt. the next week, :Sinking:and cold turkey...you know how well that goes for any one with autonomic neuropathy. My dignity went out the window and down the toilet....by the time my doc appt. rolls around, I am pretty well thru my WD...again.

So today, I sign this 3 page contract, that basically absolves them from any possible circumstance including armageddon. I have promised to give them my first born child to harvest body parts from (they don't want mine, I am sick), my Subaru and best dog, oh and next year's crops....all of them. Oh, and if a drunk driver hits me, it's my fault, no matter what. :thud:

I sign this thing only because I am convinced by the doctor that EVERY patient on any narcotic, including Darvocette has to sign this damn thing....plus, I had a headache and my grandson by then, had had it and cr@pped his pants too. And I have come to the realization, I hurt really bad without medication and nothing else really helps, not even my Morontin.:Doh:

Ok, I get this slew of scripts that needed filling....I didn't pay attention, I just was handed all these scripts, which I shoved into my important papers section of my purse, which also contains my cell phone.:Bow: and leave...Ok, they win.

I get to the megapharmacy and walk in with this 20 pound burping kid,who has deposited the contents of his last bottle on me. He smells like a compost bin....drag myself to the counter, and voila....there are 2, yes, TWO scrips for vic. I am thinking, what is wrong with this picture??:Hum:

Well, I knew it was an error and told the pharmacist and then immediately called my doc :doctor: to tell them what happened....one must have been attached to the contract I failed to come sign and then she wrote one, but half of me wondered....what if they KNEW there were two and they tested me...I really like my primary and would not want to cause her any problem, but I wonder how often this happens.:Ponder:

I have to laugh....if me signing my life away that I won't possibly use more than my allotment per day, will stop the drug dealer on Main St. well bless them...I don't think it will make a dent. People that steal script pads, get multiple narcotic scripts from multiple docs, go to ERs, etc....or make the cr@p themselves, I dunno, I have no idea.....but, I just want to be able to walk on my feet. That is all I am asking....walk on my feet....use my hands....not feel like my rib cage is going to snap at any second, or my head blow up, or my neck....blah, blah, blah....

I have been to a pain clinic and all they ever offered me were drugs I can't take due to movement disorder. I went to one pain clinic where I waited 3, that is THREE hours before I left, in disgust. I am not depressed. I am not angry. I am well adjusted given the fact I live in chronic pain from SFN and a few other maladies. Apparently one doctor feels the IVIG should render me painless, somewhat like her binge did her.:Poke: Sure I could have reported her and lost my good docs too....my thought was just don't see her again and so far that is working ok. My primary will get her script back....cuz I am honest, and she has taken my pain seriously.

Thank God for my neuro and primary, even if I did have to sign the Snagma Carta to get my 'pain pills'.

I must be unique in my experiences. What?? No one gets 2 scripts after being told they can't have one.:o Oh, the joys of pain management. Oh, back to Ghost Hunters for me.....I am alone in my own little world.:(

I take a narcotic and have never had to sign any kind of contract....we are using these drugs the legal way. Maybe it's a state law in some states to sign a contract?

I only signed a phamacy notebook in 1 pharmacy in the 1st year around 2003 where I received my prescription too. I think that was a older procedure that seems to have gone by the wayside probably because of records being on computer.

Stay tuned...likely coming to your state soon.

its here already. pain clinic wanted me to sign a contract even for a steroid shot. i told them im not there for narcotics and wont be getting any from them. its not a state requirement, it s a doctor covering their *** from the federal drug enforcement administration thing. its solely to protect them. the ones i have heard about include drug testing to see if you are actually taking the narcotic and to see if you are taking anything else that is illegal or you dont tell them about.

As the song goes keep on trucking.. I had a Rheumatologist tell me that its normal for someone my age to have numbness and tingling in my legs:confused: for weeks I walked up to everyone my age and not one answered yes:D
Then I had a Neurologist say " I don't know why your here and the best part he was on Mistery Diagnoses after my visit:( so kept the spirits up ! Its been two years and I can not tell you how many Doctors, tests, lab work, citys and States I have seen and been in and I do not have a dx yet:grouphug:
Sue Bee

Oh geesh! The 'RULES' are coming!!!!
 

To be followed by more rules then even MORE RULES!
I'm off most pain pills, 'occasionally' either a tramadol or a tylenol! Why? Because the meds only knock things down 1/2 to one point on the pain scales. I have learned to live with the big TRADE-OFF! I live in pain? But, I've gotten used to the day-to-day. The real pains? I take a pill, yes, but don't expect much at all.
Last year, when I'd broken my leg? I was on the BIG-TIME pain meds & a LOT of them. They didn't do too much for the pain, per-se? But they sure muzzied the brain so I didn't care so much.
I've gotten used to the pains, I'm not happy with them [at all!] But, I like having my mind in the here and now for when I truly need it! It's not excruciating as it was at onset, that or I'm simply used to it now. Some suggest that I go to a 'pain specialist' on occasion, I refuse- and will continue to do so until I really can't stand it any longer! Besides? I've not heard of anyone stellar in my part of the world, and I don't want to sign my life away to extra psych evaluations and other crud that really isn't necessary.
My current docs control my pain meds, one doc prescribes 95% of them, except in the emergencies.... I don't abuse them? I hate the constipation! THAT is a trade-off we don't need to deal with! IF we can avoid it.
Heaven help us all! :grouphug:!'s - j

I have to sign a contract once a year, doesn't bother me much. What did bother me was a random urinalysis, not because I abuse or use too much, but because it cost 500.00! My insurance paid 80%, but still I thought it was an error. I called billing and she says nope, not a mistake....they were looking for every drug known to mankind, including no trace of drugs! Found out then that people go there and get pills only to turn around and sell them on the "street", so if I had no narcotics in my system I'd be kicked outta there forever. I never thought at 54 that I would be in such lousy shape or need narcotics and I feel like a dirtbag every time I go there, most patients there have lived the hard life, at one time I looked down my nose at them.........karma I guess for being such a pious snot! Just joking.......

Jannaw, my feelings exactly. To think they used to trust me enough to dispose of narcotics in the old days. We used to count them and flush 'em. I am sure the fish downstream appreciated it.

This subject gets me so angry! Between having someone hand me a cup to pee in before anyone even talked to me for a job interview yesterday and anxiously waiting to see what my mother's hospice care is going to do for her pain, I feel like defacing drug-free zone signs in the dead of the night. There have always been drugs. If you don't want your children to use them, deal with your children, don't punish the rest of us who might need them!