Testing and Pain Management Survey
 

I’d like to take a poll of sorts to help me figure out what I want to do right now. So far, I’ve had copious lab work done including vitamin deficiencies, glucose, tolerance, heavy metals, etc. plus an EMG and a QSART. Everything to date has been negative. I’ve downloaded but haven’t yet filled out the LisaJane spreadsheet/workbook to see what’s left to do because one voluminous set of blood work hasn’t gotten into my hands yet (cripes what you have to go through sometimes to get a hold of things that are yours!)

I’m going to see my third neurologist on Dec. 8, and I’m pretty sure that he’s gonna say “idiopathic, thanks for playing, now off to the pain management clinic with you like a good little girl.” I have two questions for you all:

1. Of the people here who didn’t find the cause to be an obvious culprit like diabetes, hypothyroid, alcohol et al, how many of you have actually ever found what is/was causing it? I just want to get an idea of how realistic it is for me to hope for that.
   
   
2. Of the people here who have gone to a pain management clinic/specialist, how would you rate your satisfaction with controlling your pain?

I’m not emotionally ready to give up, but I’ve been out of work since June, and I need to decide what’s worth it for me economically. I do have medical coverage, but the year end is coming and the deductable and out-of-pocket clocks will reset to zero soon. So I’d really appreciate it if you would share your experiences. Thanks in advance.

Hi Joan,
I've been idiopathic since my diagnosis six years ago. I go to a pain management clinic and I feel like they are meeting my needs at this time, but should I need to increase any dosages I would be hard pressed to get there. The state I live in are airing commercials about prescription drug abuse and how it caused 300 deaths last year. I feel they are becoming very conservative because of this campaign, more like scared about getting in trouble with the feds..... I know there is abuse with opiates and that it is nothing new but it doesn't allow much for those of us who take them to prevent break-through pain or accelerated symptoms with this disease.
I believe I will never know the cause of my neuropathy as it hit me like a freight train in the middle of the night, my personal belief is viral, I had been sick a couple of weeks prior to the onset???? Who knows.......good luck Joan with your new doctor.

Joan,

My gamut of tests were negative as well. Long story. Anyway, my Neurologist treats the idiopathic pn (diagnosis changed to central pain syndrome) with Klonopin and it helps! I have a spinal PM doc for all the spinal issues and I think he is just great! In any case, I think the majority of my issues are mainly radiculopathy so injections help a great deal as well. At least I can keep the dosage of the two meds I do take very, very low and when I get the injections it really takes down the burning, tingling and pain I have in my feet. And I know what you mean about the deductible being reset to zero. ;)

In the absence of a cause so far and I haven't looked thru that workbork for thorough diagnosis, idiopathic but heavy leaning towards toxic or viral. In fact I surmise I have accumulated buildup in organs/bones of toxins that are keeping this environment prime for a neural virus. Of course that is just a guess. I am going to try and get the other stuff done. I saw an Ontaryngolist at Duke for the Dizzy Spells and he wants to do a CT spinal tap something to look for spinal fluid leak into the brain causing some of the other vestibular symptoms and headaches.

I did the pain pills at first but started to notice I was worse off because I was forgetting what positions/motions/activities caused the pain and would constantly trigger it. I realized when I dialed the meds down a bit, I had more control and could stay within the limits and not trigger or aggravate the problem. When I was on Neurontin, every couple seconds was a trigger(I called it stumbling). I think the antioxidants have helped the most. The most beneficial for pain that acts like an Antidepressant is Grapeseed extract OPC-95 100mg(stimulates Norepinephrine and Dopamine, raises pain tolerance, increases circulation, thins the blood, kills allergies, etc). Then I take Gotu Kola daily and use Magnesium Oil on demand among other things.

I think in the interest of your survey I'd like to know how many here have secondary illness/disease that doesn't stem from the known causes of neuropathy. For instance I ruptured my L5 disc in 1991 and haven't been pain free since, also I was diagnosed with rheumatoid which at this point is pretty mild. I'd like to see the idiopathic members that have something else wrong under this posting.

I'm idiopathic but I believe mine is hereditary based on my knowledge of my Dad and the things I observed in him over the years as he never gave it a second thought. I asked my Neuro yesterday what benefit there would be to my going through expensive genetic tests to find out what it is, if that would even reveal it, and the end result might be just being able to put a name to it. I also asked if there could be anything to do to stop it, and he indicated "no", so I'm thinking that any further investigation at this point would be expensive and wouldn't really help me in any way, so I'm now leaning toward just accepting that I have it and not pursuing it further. This is just my opinion concerning my own situation so please don't think I'm trying to tell others that they should do the same, as I'm not. Putting a name to this, if that can even be done, won't stop it or change its course or the treatment I receive. My thoughts may change as it progresses more, but for now this is where I'm at.

I am called idiopathic but I am very sure it was a toxic reaction to a drug. We have all had something insult our bodies, viruses, chemicals, God knows what in this day and age. I am just trying to take the best care of myself I can.

I have not been to a pain clinic yet although I have looked into it. I have not really found anything to control my symptoms either though. I have tried about everything an cannot or am unwilling to tolerated the side effects. Some stuff plain don't work. I will agree with many here that tramadol is useful and does not bother me much. Marijuana is a consideration as well. I am doing accupuncture but it is to soon to tell on that. I am also going to get a light therapy unit of some kind and maybe a tens unit as well. I will post on the effectiveness of these later. Best wishes to you and yours.

I also have spine issues but in doing the EMG/NCV tests, the neurologist was able to separate the radiculopathy from the PN and I believe I may have experienced the burning before the spine issues came up, for what its worth.

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