Friday is the first anniversary of my third marriage.

It seems a handy measuring point to see how the disease has progressed. In the last year I have been re-tested by my 2d neuro, been put on the opiates/medical marijuana circus train, and fired my "primary provider" (Kaiser-talk for a cheaper quarterback).

It scares me to count the differences. I spend at least 2 hours a day directly involved in self-care (gotten the Lido-derm patch application procedure down to 8 minutes), not counting trips to the pharmacy and medical, dental and optical business.

I'm in day 10 of the trial period of Lyrica [600 mg daily], a prescriptive path my new neuro advised me to try despite (a) her complete lack of experience managing someone with PN at the highest dose, and (b) the absence [apparently] of anyone in the Kaiser neurology department that has managed that. I feel like I'm the new guinea pig of the Kaiser crowd.

I don't like the effects of Lyrica even at 450mg; if I stay at 600mg I suspect by 2d anniversary I'll have lost at least 4 molars (the consideration of the prospect of which included the loss of ability to chew easily and thus enjoy a wide array of food) and I won't be able to find my way to my bedroom, let alone string two sentences together (funny how almost all the drugs I take include possible memory and cognition loss in their warnings -- but I think it is Lyrica because it is the only one I've adjusted).

2d neuro told me I'd know by day 10 if the higher dose works or not.


How the hell do I know if it is working or not - if by "working" you mean I have increased tenderness and sensitivity in my teeth? I don't think it has helped the pain, yet I know the recent heat and increased work stresses probably push the pain higher (because I was up to 7.5 a couple of times last week) -- and what about the effect from the Lidoderm?

I'm thinking it isn't working and I should go back down to 450 mg. At least I'd still have teeth to be able to put a branch between and bite down on during the peak pain.

I feel like a contestant on the old TV show, "Let's Make a Deal". I've made it to the finals where I have 3 doors to choose -- one of which is lose it all. I've opened the door called "opiate treatment" and didn't like the side effects AT ALL. The Lyrica path seems lost.

So I need a second opinion. Someone outside the Kaiser cult. I checked at OHSU (the medical research and testing center of the state), but their team is primarily MS and Parkinsons. No one with peripheral neuropathy. I've heard of the famous national clinics Mayo and Cleveland [they may have lost King James, but they still have health care choices most of us can only dream about].


Is there some medical research/teaching/treating association for peripheral neuropathy I could check to find docs closer to me? I am pretty sure I can get Kaiser to pay for an outside second opinion (and I'd even pay out of pocket if it is someone with demonstrated experience).

I assume that once I've found the person, I will need to arrange to send records (my two nerve conduction tests, blood work, and ?????????) for review.

Anything else?

I appreciate all the eyeballs that might have read this far. Sometimes I feel a little lonely about this, fearful that by my second anniversary it will have progressed into my hands to the point I am unable to type messages like this.

Thanks.

Cowboy

Hi ~ I've heard about Kaiser, and it hasn't been good. I'm sorry you have to contend with them.

Unfortunately, you're goiing to have to see another Neurologist or Neurosurgeon. lol. I'm sure you're sick of them, but they are your best bet.
You'll need all the records you can get your hands on that pertain to your problem, i.e. mri's, x-rays, blood work, etc.

I've never taken Lyrica but if it's like all the other opiates, it does a real number on the teeth. that's because it causes dry mouth, and the teeth are exposed to lots of germs that don't get washed away by saliva. It can be helped by using a toothpaste for drymouth and also a mouth wash for that condition. You can get those at the pharmacy. I just had extensive dental work due to that condition, and was counseled by my dentist as to what to do.

What I use for the pain of neuropathy is TOPAMAX. Most docs put their patients on Neurontin, but that didn't work for me. It made me loopy, i gained weight and i hated it. I asked my doc to put me on Topamax, and it has worked wonders for me. My neurpathic pain is GONE. I no longer have the tingling, burning, stinging, hot-poker feeling in my legs. I take 400mg of topamax per day and it's a life saver. perhaps it would work for you too. just thought i would mention it.

anyway, i hope you can get some relief and answers. god bless and best of luck. hugs, lee