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.