Thanks everyone for your responses. It pretty much sounds like pursuing the cause really isn't worth it. The pain management sounds like a mixed bag. I guess I just need to work on accepting the PN and hope for the best as far as responding to meds for pain goes.

Testing & Pain Mnagement Survey
 

In answer to your first question as to how many have actually found a cause, I have.
The Neurologist that I went to was one sharp guy. He ran all the nerve test, etc. But then, he ran some blood test as well, and from the results, he recommended that I see a Hematologist that he knew. I agreed, and the Hematologist did some extensive, and I mean extensive, and expensive ($15,000) lab work. Results, with that and a bone marrow biopsy, he pinned down the culprit to a very rare, incurable cancer called Waldenstrom's Macrogloblunimia. Now, as soon as you get your tongue untied, I'll explain. WM is caused by an overpopulation of the white blood cell called IgM. Somehow, one of these suckers got screwed up upon being born, and came out with some wierd characteristics. Seems he can't die, like his brothers, and he acquired the ability to reproduce, and multiply. Normally, there are supposed to be around 350 of these guys in your bloodstream at any given time, all waiting to be called upon to fight off some intruder. At last test, I have some 7,100, and growing.

The first series of 4 infusions of a drug called Rituxan produced a drop in IgM level of about 800. That ain't gonna cut it. So the Dr. put me on a high dose of steroids for a month to lower my immune system, thereby giving the Rituxan a much better chance at doing a better job. From what I've learned on the internet, that is the recommended treatment regimen. That should drop the IgM by about a half, at least. I don't know where we will go after that. There's always chemo, plasmaphoresis, and a few other regimens that I have very little info on. Seems that most of the treatment for WM is gleaned from clinical trials, because that's all they have to go on. It isn't a disease that a lot is done for. Only about 3 people out of every 100,000 contract this disease.

So, to answer your first question, yes, in my case, a cause has been found, although I don't much like the diagnosis. Oh, by the way, for your information, the original problem that slowed up was, for me at least, peripheral neuropathy.
Initial symptoms, pain in my feet when I first put weight on them in the morning. That problem has progressed quite a bit. At this point, I have pain in both hands, as well as the feet, and a lot of muscle waste in one hand. Looks like the darn thing has been on a hell of a diet for the last year. Not a joking matter, I know, but better than wringing my hands, for sure. Typing this letter is one challenge, for sure. More correcting than typing. Last two fingers on right hand are beginning to curve more than stay straight. Keep hitting the wrong keys.

One thing that I have experienced that makes things better, and that's vitamins. I used to take vitamins religiously, but had gotten away from them for quite a while. As the PN got worse, I thought I'd better get back on them. I take Centrum, 1200 mg Fish Oil, Glucosamine Chondroitin, High potency B-Complex, as well as 1000 mcg of B12 daily. I find that when the PN gets bad, as it still does, it isn't AS bad as it used to be. And, the difference was almost instantly. As soon as I started back on the vitamins, the PN seemed more subdued, more masked. As if it was more in the background. Doesn't keep me from sleeping at night like it used to do. And, since the IgM level is still up in the clouds, that isn't what's making the difference.

Supposedly, when the WM gets in control, which the Hematologist tells me he'll make happen, the PN will go with it. And, with that, the various pains, and half a dozen bottles of expensive medicine. Now, that'll be the day. I have tried to "walk in your shoes", as they say, and consider what it would be like to have no cause to attack, to only look to pain management centers as your only recourse. With my limited "patience" I don't think I would survive for very long. I bow to your courage, and determination. I only hope you find the long sought answers, and that you are successful in treating the conditions.

Hope I've contributed something that will prove helpful. Take care.

Wow Gyrene, that sure is amazing that they actually did find the cause with it being so rare. I sure hope that this treatment works for you and that things get easier very soon! Thanks for sharing your experience with us!

I have been told over the years....idiopathic, hereditary, and now that my ANA finally went sky high....autoimmune. I am getting IVIG.

Sometimes things evolve over time.

I went without treatment for some time. Some times I was on IVIG, at one time steroids (never again).

I am back on IVIG and it appears to be making a difference, since I am off all pain meds.....altho I am a sloth. I am not doing much.

See if you can just see the doc every 6 months...you don't know what will show up at some point in time.

Question for the OP.. your EMG was negative?
How are you sure that you have PN?
Or are you going based on sx's and assuming that you have small fiber (which generally wouldn't show on an EMG?)




As for my own testing:
I've had the slew of blood tests:
Diabetes, B12, other metabolic crap (just cause I eat like crap), I am pretty sure they tested me for HIV as I had to sign a concent form for one of the blood tests.

They did an ANA, and anti-MAG, and all the other funky ones when I went to MAYO.

I've had my thyroid tested, kidneys, etc.

EMG shows a length dependent demyelinating (sensory greater than motor) polyneuropathy, with a secondary axonal loss. **Had 3 EMG's, which all point to the same thing**

spinal tap was normal.

Just had a nerve biopsy on 11/24/09.. waiting for the pathology, have a follow up in neuro on the 8th.


Pain management- not needed.

Thankfully even though I'm mostly sensory, I have numbness and very little issue with pain.
Although, I have been having increasing problems with hypersensitivity.

How do I know I have PN? Well, I guess I don't know for sure, but nobody has ever suggested any other posssibilities. I have the classic burning that started at my toes and has crept up the back of my legs recently. I have that (forgot the word) sensitivity that makes even bedsheets touching my feet painful. Is there anything else that it could be?

Have you had a skin biopsy? A lot of small fiber persons get that done to confirm neuropathy.

As far as what it could be.. I would assume you've tested negative for diabetes.

The large majority are genetic.
If you want the low down on these go to the important links sticky, and then check out the links in there.


Here's the list:
SENSORY DISORDERS: Small Fiber
Metabolic
Diabetes mellitus
Hypertriglyceridemia
Hereditary
Amyloidosis
Hereditary Sensory Neuropathy I (HSAN I)
Congenital sensory neuropathy with anhidrosis (HSN IV)
Congential insensitivity to pain sensation without anhidrosis
Hereditary ataxia with thermoanalgesia & loss of fungiform papillae
An-α-lipoproteinemia (Tangier's)
α-galactosidase (Fabry's)
Hereditary sensory neuropathy + Spastic paraparesis (Cavanagh's variant)
Hereditary sensory neuropathy with loss of pain perception
Congenital indifference to pain

Navajo neuropathy with arthropathy
Cold-Induced Sweating Syndrome
Toxic: Kepone; Ciguatera
Infection: Leprosy
M-protein
Idiopathic: Often painful

I have always believed that the "man upstairs" controls all things. I have always tried to let Him lead me. It ain't always easy, being a stubborn cajun like I am, but it is always the best way. I can look back over my life, and see all the times when He just turned me around, and pushed me off in another direction. And, it always turned out to be the best direction I could have taken. With the fact that WM is incurable, and prognosis is around 5 to 6 years, I have already taken up about half of that. When I first began to exhibit symptoms, ( foot pain) I had no idea where to start for relief. I was going to a chiropractor at the time, and when I mentioned the problem to him, he took pictures of the bottom of my feet, and I wound up with what was called "foot levelers". I tried them, but eventually gave up, as the pain didn't go away. I went to a podiatrist, and he prescribed SAS shoes. Tried that as well, but to no avail. Pain worsening by now.

My daughter, who is a RN told me to go to a neurologist, as she believed it was nerve related. Bingo! As I mentioned in my first post, both the neurologist, and the hematologist were top notch. Again, that "leading" by Him. So now, we continue with the Rituxan for now, but, time is ticking away. You tend to gravitate to Him a lot more than you ever have in your past, I'll guarantee that. We all have to go, but when the time frame is posted, you tend to pay closer attention to things than you ever have before.

Hope I haven't bored you. Take care