[JoanB]

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.

[jannaw]

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.

[Kathi49]

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.

[aeb105]

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.

[jannaw]

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.

[nide44]

Originally Posted by JoanB

I’d like to take a poll of sorts to help me figure out what I want to do right now. ...............

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.

Probably less than 5% or maybe 3% is a realistic figure... for finding a cause, once considered to be idiopathic

1. Of the people here who have gone to a pain management clinic/specialist, how would you rate your satisfaction with controlling your pain?.

I found a pain control clinic's efforts worthless, in my case.
Working with my neuro & PCP finally got me on the right meds to control my pain & symptoms.

[EE03]

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.

[Kitt]

Originally Posted by EE03

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.

Hi, What kind of symptoms do you and your Dad have? Just curious and what kind of "treatment" are you receiving? Thank you.

[homer80]

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.

[EE03]

Originally Posted by jannaw

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 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.