Well, my chronic, progressive, terminal neurological disease has now passed the point my PCP feels he is no longer capable of keeping me comfortable. He explained seeing a pain specialist and pain management clinic "may" be better suited to help me stay comfortable.

I was amazed the amount of information and paperwork required "prior" to them even accepting me as a new patient and scheduling an initial appointment. My appointment is scheduled for next Monday. I have no experience with pain specialists, unlike "too much" experience with neuros.

What should I expect on my first initial appointment? What doctor's questions and type of physical evaluations are normally done? Heck! I have a hard enough time trying to describe the types, locations, and levels of pain because it isn't localized at all, comes and goes with no rhyme or reason.

I'm also dealing with Type 2 Diabetes and even though well controlled by diet, I'm sure it will come into the mix. Any insights and experience shared are greatly appreciated.

Hi. I have seen a few different pain doctors/anestesolgist. Mine did not do or order more diagnostic testing since I am basically tested out. It was more about finding the right treatment for pain control. First make sure to being all test results and any doctors notes. I always come with my list of ?'s and meds I have tried and am on. Is the one you are seeing an anestesologist too? With most of mine they suggested some treatment other then meds. For ex I have RSD too so the SCS or blocks etc. Some I have seen don't give many choices it was one suggestion and if I did not want to try it I needed to find another doctor. My best pain doctor was one who gave some options and addressed my fears and concerns. Also did combo of new meds too. For myself I always ask what the side effects could be since I have had issues of getting worse and if that does happen what would be the next step to keep me in a comfortable state. Usually the doctor does look at your areas where the condition is. For me their is not touching though so it is just a view. They do ask to describe your pain and what level it is at. Also during course of treatment that ask for the level to see how you are coming along. You usually have to fill out this questionaire. It also asks questions on mental side like are you depressed and how you are living in daily life with actvity and what your ability is.I have times where it is hard to describe as well. Just try to do your best. I hope your appointment is good and you get some relief.

Hello, Craig, and welcome to the PN forum.

I would like to ask you since you have controlled diabetes, if you have had any blood work for B12 and Vit D levels?

Many of us here have improvements in peripheral pain, with improving low levels of those two nutrients.

Is your pain, nerve pain? Joint pain? muscle pain?

Also some pain, in MS, (I see you posting on MS)...is central, meaning in the brain. So if that is the case for you, then pain management is the only way for you to go.

If your pain is mixed, then peripheral interventions include Lidoderm patches, various cooling rubs with Menthol in them,
even strong magnets (if you can locate one nerve specifically to block).

Diabetic neuropathy has some supplements that may work.
Magnesium (because diabetics lose this thru the urine)
Benfotiamine (a better form of thiamine B1)
lipoic acid.

These have studies behind them as useful in diabetics.
Acetyl carnitine is showing in some studies benefits as well.

Pain management may offer you Neurontin or Lyrica for blocking some pain at the spinal cord level, antidepressants for acting on central pain in the brain, and for severe unremitting pain there are opiates that may be offered. Some of us use Ultram/tramadol with success. The pain doctor would consider implantable devices if you have the criteria for them. Most pain management doctors do not recommend supplements. But I would ask for the blood work to be done for D and B12.
Here is why:
http://neurotalk.psychcentral.com/sh...hlight=vitamin
Many people are showing up on these forums with very low D and also very low levels make pain much worse. So you need to discover if this is true for you, as the treatment is very inexpensive, useful, and may take care of much of your discomfort.

Some people here do use opiates, some don't, and some have used and quit them. It is a very personal decision, and people vary in their response to them.

Also consider some lifestyle changes. Particularly removing gluten from your diet, to see if that helps:
http://neurotalk.psychcentral.com/thread121516.html

mrsD,

Thank you for such a comprehensive response full of useful information.

Yes, I post on the MS boards because in 2000 I was initially misdiagnosed with RRMS and them SPMS, undiagnosed for two years, suspected diagnosis of Hereditary Spastic Paraplegia. That remains unconfirmed because I will not spend the $7,000 for the genetic testing, nor do I trust the "system" as how it may reflect on my children and grandchildren.

All of my blood labs are well within normal limits with no deficiencies. My A1C is 5.6 and my average glucose levels hover around 98 to 105. My primary diagnoses include Cerebellar Degenerative Disease and Spinocerebellar Atrophy both with Ataxia.

PN is only one small part of my pain with muscles spasms, involuntary movement disorder, and neuralgia. I am currently using Neurontin, Topamax, Tramadol, Lortab, Requip and Klonopin. At this time the pain is progressive, as are the disease and symptoms, with an average pain level of 6.5 to 8.5 on a good day.

Throw in this mix the residual effects of a near fatal brain stem stroke and irregular sleep-wake rhythm disorder, with Ambien CR noneffective but for approximately 3 hours, and you have quite a medical, physiological mess.

I've done considerable research on supplements available in many different areas. Even with my PCP's review and willingness to try them, they have all met with little or no positive effect. As this disease has progressed, I've accepted the terminal prognosis with this referral to a pain management clinic my PCP's last resort to keep me as comfortable as possible and still function.

I apologize for being such a bummer. I come to these particular boards primarily because of my long history and the many similarities of my disease course to MS. Thus, as in your response, receive considerably reliable and applicable insights.

So, I pose my original question. What should I expect on my first initial appointment? What doctor's questions and type of physical evaluations are normally done?

There is an ataxia that is caused by gluten. So when you have the time please check this out:

http://sites.google.com/site/jccglutenfree/

http://sites.google.com/site/jccglutenfree/glutenataxia

So I apologize if you already have had some testing for this specific problem. Not all doctors regularly look for the gluten connection.

That is alot of pain you have... you are a brave man to cope so well with it!

Hi Craig,

I'm new to this forum, but thought I would put my two cents worth in. I am a 5 time cancer survivor with chronic pain to my left chest wall, side, and back which comes from scar tissue wrapping around my nerve bundles. At first they thought the best way to go would be to surgically remove the scar tissue every time the pain got too bad to deal with, but this quickly became a very bad answer. The more surgeries I received the more the scar tissue grew! Seems like they could have figured that one out.

Anyway, long story short, I eventually entered the world of pain management. The best advice I can offer you is the same as many others; have your list of meds for your other conditions because they will not treat you without knowing what you are currently ingesting and your list of questions because believe me when you walk in for the first time your mind will go blank.

Seems like the first time for me they did basic testing. Blood work, urinalysis, ekg, that sort of thing and they may also (depending on the type of pain management specialist you go to, offer to enroll you in clinical trials which is even more testing. The clinicals can be great but somewhat grueling. Just be really honest and upfront with your docs about what you will and will not consider.

Please try and solve your pain problems with other solutions rather than going with opiates first. They are a quick fix solution that doesn't always work. I spent 10 days detoxify off Fentanyl this past September and it was hell. There are some pain doctors who automatically take that route. I'm not familiar with your pain but there are other meds that you can try first that won't have the side effects of narcotics. Right now I'm taking Lyrica and Celebrex along with Suboxone which has some narcotic but not in the same sense as compared to Morphine.

I wish you all the very best and hope you get the right treatment for you.

Valium gives more muscle relaxation than klonopin, which does not give spasm relief. Then there is baclofen, which can be used to relieve spasm, and I found it quite effective. It can be given via a pump, but there are downsides to that too.

Lortab is an opiate, if I am correct it is a hydrocodone? I have autonomic issues and if I use too much opiate for my system....it shuts down, totally. I have to titrate things very carefully.

Hopefully you will get a good regimen for your pain and muscle spasms, which I know are exhausting. I have PN and autoimmune issues and I do get spasms too, and I find them very exhausting. I wonder if you have restless leg as well? I do.

I've seen three different pain management docs and I've received different treatments from all three. I should note that I've not seen them for PN/SFPN, and that may factor in the treatment.

The first doctor was affiliated with the neuro's office I was seeing. I had to fill out bubble forms showing pain locations and levels from one, the other two used written questionnaires. The first 2 docs never did any sort of physical exam. The one I currently treat with will perform neurological assessments each time a new symptom comes up. Again, each time I go in for injections, he will do a physical exam of all of the areas he is treating and he rates his findings independently of what I report. My current doc is the best one I've seen. He was an anesthesiologist first and now specializes in PM.

The first one I saw gave me the impression that he only wanted to prescribe meds and he seemed to be on the retirement plan.

The second one was way better than the first but my experience with him was limited to one condition only.

The third/current is the best. He is thorough, knowledgable, and he listens.

It seems as though you can encounter the full spectrum of docs in this specialty as much as others. I hope this helps answer your question somewhat. Take care.

This is great information and I would like to respond accordingly.

mabolick: I am totally prepared for the appointment in that I've downloaded and completed all new patient forms, including a complete listing of all current meds with specifics. My wife will be accompanying me as she has since day one when I started seeing neuros. That way we don't miss any information due to my cognitive challenges and the docs are able to get her impressions of my daily living. Any clinicals are out especially after going through almost 8 solid years of "testing," second/third opinions at various universities. I hate taking meds, prefer to keep them to nonaddicting and minimal therapeutic dosages.

cyclelops: I have been on Baclofen for several years but effectiveness is diminishing with disease progression. Not interested in the pump option at all. Lortab 5 is Hydrocodone at 500mg and my PCP's last resort as a temporary stop-gap. I have to be really bad off to even take one in a 24hr period. Rx'd for every 8 hours. BTW, same for Clonazepam, Rx'd .5mg 3x a day. Never going to happen. Max I've taken in a 24hr period is one whole pill and most of the time I will break a pill in half and only take that because I hate the side effects. I've had severe Restless Legs (RLS) for years and take the maximum dose of Requip allowed each evening and bedtime.

EE03: My two last neuros, primary and for second opinion, say nothing more can be done for me, don't even bother making appointments unless an acute situation and directed by my PCP. I've had enough of neuros. This is the main reason my PCP has referred me to a top clinic which is anesthesiologists based in treatment and not "guess and Rx."

I've been around the medical industry for over 18 years with a background in organ transplantation, practice administrator, as well as a "complex case" patient. So I feel pretty well researched and not intimidated by docs at all. Everyone's insights are greatly appreciated and I feel like now I have a little head's up what to expect and be attentive to with this new experience.

I will go into this cautiously optimistic, maintaining my priorities and not willing to trade relief for a whole new set of potential problems, addiction, or side effects. I will let you know how it goes.

I am in pain management, but am seeking to be as pharmaceutical-free as possible. In addition to transverse myelitis (possibly MS) I have Crohn's. Both are inflammatory and one will trigger the other, keeping me working nearly full-time to maintain a balance and keep my symptoms in check. I currently use Norco and medical marijuana for pain and spasm control for both diseases. I am about to ask if I could switch to ultram, but that would be through my neuro, not my pain doc.

I see a PhD neuropsych and have been working out of Jon Kabat-Zinn's book Full Catastrophe Living. Zinn's mindfulness training is employed for both physical pain and PTSD. I had already developed my own breathing exercise, teaching myself to do it automatically when triggered by certain music I like. Spoken relaxation tapes drive me crazy. I embrace this approach, but have real difficulty digging in a book, and it is taking me some time to cover the material.

My first pain visit was more like talk-therapy than a physical exam, so I suspect my experience has been slightly different than yours may be.