--has long been the head of the Cornell Weill Center for Peripheral Neuropathy, which is one of the world's leading research centers into neuropathy, especially those from immune causes. (You can google up papers that have come out of this group--there are hundreds.)

The Center has recently expanded and "broken up" into two facilities--Dr. Latov and Dr. Chin still head up the center on the Cornell Campus on the east side of Manhattan, and Dr. Brannigan has taken his group up to Columbia Presbyterian by the George Washington Bridge. (The Cornell and Columbia Medical systems are partners.)

I think of all of them, Dr. Chin has the best communication skills (he's also the youngest), and he's very thorough and isn't put off by a challenge.

See:

http://www.weillcornell.org/physician/rlchin/index.html

http://www.weillcornell.org/periphneu/

http://web.neuro.columbia.edu/member...les.php?id=193

THANKYOU! for your insights. I am so fed up with Doctors with terrible bedside manors. Through this ordeal I have found some very good doctors in various fields that I can reffer to others and am greatful for that valuable information.

I have spent the better part of the last 12 months becoming an expert in Esophageal Motility, drugs interactions and uses (TCA,GABA,SSRI,SNRI and pain meds), Diet, Stomach, heart, gallbladder and esophagus LES and UES behaviors .

Since the back MRI’s and Neuropathy direction is something new to explore, I am trying to focus leaning more about the cervical/thoracic spine and neuropathy. It's difficult to keep reading and researching as it stresses me out so much, just the same way going from Doctor to Doctor in hopes to find one that may see something that the others haven’t. It's so mentally draining and it’s been an emotional rollercoaster ride for my wife and me.

I am thankful there are helpful people on forums such as this that are willing to extend a helping hand. I hope one day I can get to a point where I can mentally and physically with my pain to be able to help others find the right doctors and give them encouragement. Unfortunately, I am not at the stage yet as I get depressed and scared during different parts of the day as not truly being diagnosed with what is causing my pain is downright horrendous.

Two things I was thinking today when walking to church was this. If my burning in my back is caused by a pinched nerve in my back or neck would the supplements still help?
Secondly if there is nerve damage, why does pain better at some parts of the day and worse at others? There is no rhyme or reason to it. If a nerve was damaged wouldn’t the intensity pain be constant?

Your body secretes inflammatory molecules called cytokines in response to assault. Viral/bacterial infection, mechanical, vaccines, autoimmune etc.

These may flare and abate during the day. Also during the day your own cortisol levels fluctuate as well. Highest in the morning after breakfast, lowest at 4am or so. Second high around 8pm and minor low at 4pm. Cortisol response can abate inflammatory situations, and if your cycle of pain matches this cycle one can think you have an inflammatory issue.

If you flare and abate, you may be allergic to something depending on your exposure. Trying some antihistamines like Benadryl may reveal this. I flare from potatoes! It takes hours to manifest, usually at night. Took years to discover this.

If you are gluten intolerant there may be cycles too depending on what you eat. MSG a very common food additive is notorious as a dietary trigger.

Flaring can be from blood sugar aberrations. Lows may flare burning pain, and the symptom may resolve when more normal.

Sensory nerve endings are fragile...they can be damaged. Nerves and their insulated axons can be damaged, on the way to the spine. Also the brain may become accommodated to pain, and register it even when the limb is GONE (amputated). This is called phantom pain.

So your question is complicated. And there are different answers for each person.

The best way to use this forum is to read the Subforum above first. Don't do so much at one time. Cruising the net can become confusing, esp if you don't have a medical background or training to know what is valuable, what is old news, and what is applicable information.

Some people have stated here that as healing progresses, there are good days and bad. This is because the nerves, may fire some days more than others. Severe changes in barometric pressure, as LOWs, which move in, typically cause more pain.

Maybe keeping a journal of your food and daily activity will reveal something for you. A journal can be very helpful for doctors too.

There is new evidence that some people carry a defective gene in the ganglia along the spine that result in the nerves there being unable to repair themselves. The new studies have just reported this, and suggest that SOMEDAY stem cell treatment may help. But for those with the gene error, we have no diagnostic test yet.

So just start reading.

I just wanted to update everyone on my status. I also wanted to thank everyone on the forums that has tried to help especially MrsD and Glentaj.
In October I started on all the supplements Mrsd recommended.
*Acetyl L-Carnitine 500mg 4x a day After Meals
*Vitamin B-1 100mg 1x a day After Meals
Vitamin Methyl B-12 1000mg 1x (M-F) Empty Stomach
*Pantothenic Acid (B5) Time Released 500mg 2x a day After Meals
P-5-P (B2,Mag,B6) 17mg/33mg/100mg 1x (M,W,F) Empty Stomach
Benfotiamine (B1) 150mg 2xa day After Meals
Vitamin D3 5000IU 1x a day After Meals
ALA-R 100mg 3x a day empty Stomach
*Started in December
Back in November I went to see Dr. Chin. He ran most of the test that I didn’t take already based off the Peripheral Neuropathy Guidelines by Dt Latov. Everything came back negative but I would like to note my B1 was still slightly low 6 when normal was 8-30. That could be due to the way test is performed. They read plasma levels and since I fasted before test it could affect reading. I also had a borderline positive on the Ganglioside antibody panel. To be more specific the ASIAO-GM1, IgG/Igm Panel 51-100 is Positive and 101+ is strong Positive. My level was 57. Again Dr. Chin felt that it was not a big deal as the more important panels (GM1,Gm2,GD1a.GD1b and Gq1b) were all negative and aside from the burning/allodinya I have no other symptoms to speak of.
He mentioned what MrsD said about it the cause mostly likely residing in the dorsal root ganglia. Since Central Pain Syndrome or CRPS was ruled out then the most probable diagnosis is idiopathic SFN.
He mentioned if it got worse they could try IV steroids. He did say since I am healthy and young those can play in my favor. I asked him what I could do for the burning and skin sensitivity. He RXed me lidocain spray 4%. You get it in a liquid jar. I found a travel sized spray bottle and put it in there. Used it for a couple of weeks.. Really didn’t do anything to help. Maybe for first 5 mins it helped as skin was numb but that’s about it.
Next week went to my pain management doctor and switched from gabapentin to lyrica. Plan was to go up to 300mg. I also asked to get my hormones checked out, specifically the ones DR. Smith put in his chronic pain thread. http://neurotalk.psychcentral.com/thread156416.html
The lyrica helped a little. I had 3 days in row with minimal pain but then I started to burn more.
My blood work came back and it showed my testosterone was low for my age and also my pregnenolone was low as well, but everything else was normal. I decided to make an appointment with an endocrinologist as getting those levels up may help with my pain tolerance.
We are now approaching end of December and I decided to try TDCS (Trans Cranial Direct Current Stimulation) Ballerina has had a lot of success over in the CRPS forum.
http://neurotalk.psychcentral.com/thread160980.html
It helped reduce here allodinya and since that was my main problem I figured it was worth a shot and I didn’t have to discontinue any meds. Unfortunately, it didn’t do anything for me. In fact, about a week afterwards my scalp started to become sensitive when I washed my hair. I was really stressed out now. It was bad enough my neck and upper back were burning and now the back of my head!
After the last day of TDCS (5 days total) I got to meet with Dr. Cruciani. He is a real smart Pain/Neurologist at Beth Israel Hospital. He reviewed my paperwork and listened to me and said it sounds like SFN is possible but wanted me to come back for an evaluation. So I set up an appointment.

I met back with pain management doctor and she did not want to go higher on the Lyrica. For my body weight and with lack of clinical efficiency above 300mg she said I would get more side effects then benefit from increasing the dose. Instead, she wanted to combine Cymbalta. I get nausea from SSRI and SNRI’s so I started at 20mg and then increased to 40mg after 3 weeks. I asked what I can take for really bad break through burning pain. She RXed me a lose dose of Vicodin. I took half a pill. First time it seem to help a little. I took one a few weeks later and it didn’t do anything.
Following week I went to see the Endocrinologist. Like most , 90% of their patients either have Diabetes or thyroid problems. When I told them my testosterone was low and I could possibly benefit from a pain aspect, they looked at me as if I was crazy. They told me they needed to run some additional tests to ensure my levels were low and to check my other adrenal functions. When I told them my pregnenolone was low, they said they never heard of it. I am like really? (Wow, I guess they missed that section in medical school)
Anyway, new blood test came back and my testosterone was low for my age. They RX me a 3 months’ supply of AndroGel. Before I can start I needed to get my PSA levels checked out as there is a rare chance you could have prostate inflammation. I didn’t start it yet as I wanted to give the Cymbalta a chance.
In January I met with Dr. Cruciani again and he examined me and we spoke for about 45 mins. He said my symptoms sound like CRPS because it doesn’t follow a specific dermatome but I was highly unlikely as there are no other symptoms but burning. With that being said he thinks it’s mostly likely SFN. He said that even though I had a lyme blood test there is another test I can go for that is more accurate. (Something to do with needles in back) I asked him if it’s possible to have just the burning from the lyme and not experience any other symptoms and he said yes. He also said it’s possible to try IVIG. Since I am dealing with an idiopathic neuropathy its possible it can be coming from a virus that we done even know exists. There are of course risks with IVIG as it’s a blood transfusion $30K a treatment and may not be covered under insurance.
He mentioned that my pain doctor should have tried to go up past 300mg on Lyrica and did agree about her statement there are more side effects after 300mg but if it was helping why not try 400-600mg. He thought it was a good idea to try Cymbalta and Lyrica together. He mentioned that its of the upmost importance to treat this aggressively for two reasons. One, in order for nerves to heal they have to calm down and not fire so much. Second, your brain can develop a chronic pain pattern and once it learns that pain pattern its hard to change it.
When I had my TDCS trial they stimulated my Motor cortex which which is what has best clinical success. I asked using TDCS on the Somasomatic Cortex as that ultimately part of brain that allodinya is affected by. He said it was a good idea and I could try. If I didn’t have the burning in back of my head I would , but I am afraid to right now.
Lastly, I asked him about various topical creams, he told me some help for some and not for others. He RXed me this mixture:

2% Amitriptyline
4% Baclofen
.2% Clonidine
5% DMSO
5% Gabapentin
10% Ketamine
10% Ketoprofen
5% Lidocaine
When I first tried it, it seemed to help a little but after a few more uses I didn’t seem to be effective. I then developed an irritation on my skin so I stopped using it.

Fast forward to today. I’ve been on Cymbalta almost a month, Lyrica for 3 months and I am still suffering. Some days suck less than others. I hate my life feeling like this. It’s just plain torture. Usually once I wake up a few mins after burning starts. Once I get up, shower and breakfast and meds about hour later 70% of time burning is better as day progresses with burning is tolerable or gets worse. By 4pm-930 burning almost always is at its worse. Thankfully I am able to fall asleep and stay asleep. It’s said but I just try to get through the day so I can get to bed. When I am sleeping I am not in pain or at least I can’t feel it. I also have been trying to monitor the weather patterns and it seems I do have more pain when barometric presume is low. Not sure if that would help me diagnose cause of PN.
I am so confused. I don’t know what to do. The supplements I am taking don’t seem to be doing anything at all. Every time I try a new treatment or a new drug or cream I get my hopes up only to get disappointed. I really need to get some sustained relief.

Questions:
1)My Celiac Blood tests, and Esophagus biopsy were negative. I did do a Gluten free diet 15 months ago but that was before the burning. People say the biopsy and the blood tests don’t always show gluten. There was a test you can send away that supposed to be more accurate but is not covered by insurance. http://www.enterolab.com/
I never bothered taking it because from the research I did, everyone who took it always came back positive. It’s such a pain in the butt to go back on a gluten free diet. IS there anyone out there who has any experience with this lab or other methods for gluten testing? Dr. Chin seemed to think the blood test was enough. Anyone have more hands on experience with gluten. Can it only cause burning and no other symptoms?
2)My initial thoughts were that the burning first started when I began taking 10mg of Amitriptyline. As I increased the dose the burning got worse. I was on Amitriptyline for a total of six months. MY last day was June 20th 2011. I saw and article here: http://www.aafp.org/afp/1998/0215/p755.html
Amitriptyline is on the list in Table 8 for drug induced Neuropathies. I remember Mrsd stating that this drug was on old PN lists because people were talking 150-200mg for depression but at a low dose it shouldn’t cause PN. The article was written 1998 but again who knows.
If its drug induced wouldn’t it start with the hands and feet. Why the upper back and neck.
3) I really am trying to figure out what the cause of this is, as it gives me best chance to stop or reverse this. I am not sure if it’s inflammatory, molecular, or compression of nerve)
Inflammatory – Possible gluten,, or some other virus – IV Steroids or diet?
Molecular – Drug Induced – IVIG?
Nerve Compression – Thoracic T6-7 herniation – EPI (Tried to no avail) IV Steroids?

4) I also read a post by en bloc. Apparently she has Sjogren’s but her Neurologist performed a MRI of here dorsal ganglia root. It was on her lower back and mine would need to be in my cervical and thoracic. Was anyone else able to go for such a test?

This is getting really complicated.

What I see is this:
You had many many invasive treatments. Starting with endoscopes down your neck/throat.

You had 3 epidurals....needles in your upper spine.

You had MRIs...more than one with contrast? Injection of foreign dyes into your blood.

This is all something to consider.... there is no free lunch. Every time a needle goes into you or a device goes into you there is risk of infection or damage.

Damage to the dorsal roots may not heal in some people. This may be viral as in Herpes Zoster, or other viral infection. Some people lack the ability to heal nerves in the dorsal root. We have a paper on here in more than one post illustrating that.
If that dorsal root is not working properly...putting a cream or gel on your shoulders, etc is not going to work. The pain is not generated from your skin back there. It is along your spine higher up.

The special MRI that en bloc describes may show this damage.
Ganglioneuritis.
http://neurotalk.psychcentral.com/post758457-1.html

If this turns out to be your problem, the seeing an infectious disease specialist who can prescribe the proper antivirals may help. They may also do the special Igenex Lyme testing. Or something else we don't see on these boards.

It seems you have exhausted most avenues now. Your unique doctor interventions may have caused your issues, or you may have some obscure infectious process that hasn't been identified as yet.

I don't think amitriptyline is your problem. The old lists, show it as an axonal damaging drug...but time has not proven that at all. It might be a coincidence of treatment that was not taken into account when studies were tabulated. Millions of people have used it since... and it never shows up as a trigger for PN in those low doses now. If it were a culprit, millions of uses, would generate more papers and interest.

There are also other possibilities... and I am thinking perhaps Thoracic outlet syndrome. But you don't have pain or issues down your arms do you?

I will say this. Your cortisol is highest in the morning when you feel better, and falls as the day progresses. The fact that you can sleep with this problem is really rare. People with significant pain cannot sleep. So that is a hint, I think to follow.

I don't know where else you can go... but I think viral=infectious disease and therefore that would be another stop for you.

I am sorry, there is not much else we as laymen can do for you. Your history is complex and medical and unique to you.

Yes, but The burning started with the med. Its possible it could be a coincidence but I never had burning until then.

Also the 3 Epidurals were after the burning/allodyina I had. They didn’t cause any of this.
I didn’t have any MRI’s with contrast. I had CT Scan of my neck and chest- once with contrast.

I don’t have muscle pain anywhere. I do occasionally get burning on my triceps.

My cortisol level was at 7:30am fasting was 7.7 – Range is 5-25. If cortisol levels are high at night why am I in so much pain then?

I didn't imply your cortisol was high at night. Only in the morning, which is typical for most people. Your test was FASTING. Once you eat, it goes up dramatically. That is why it is done fasting. After you eat the cortisol then reduces your pain/inflammation, until it falls around 4pm.

The the fact remains that you can sleep at night.
Many of us with PN pain cannot.

I don't think you are going to find a solution now...since you have been down so many roads. The only thing you have not followed up on is infectious disease specialty.

I'd see if you can get that special MRI en bloc describes. It shows damage to the dorsal roots if it is there. If you have that, then there really is no treatment as of yet. You'll just have to hope for healing. (that is where the supplements may come in).

Ah yes, that’s right I remember reading that. The body prepares you for sleep and lowers your cortisol level.
Any way to keep that cortisol level a little higher at night?

What do you think of my supplement dosing and schedule?

When you so infectious disease specialist are there any that you recommend?
I assume it would be different then a Rheumatologist.

What else would be effective for breakthrough pain?

Hi sorry for all you are going through. I am not an expert like Mrs D in knowledge but have had so many medical tests basically I was told at Cleveland Clinic I am tested out. Also repeats and have traveled for doctors so can very much relate to the frustration with them. I have a few thoughts
One you have to be very careful in procedure you try. If you go to 4 pain doctors you may get 3 or even 4 different suggestions. Now some are out for the well being of the patient but some will suggest expensive treatments that are not. For me I have done pain relief procedures that actually increased my pain. I guess for my body what was supposed to settle actually revs things up. I know it is a catch 22 because you want relief but it is so important to research and weigh the pros and cons.
In your past can you think of anything that may have happened which you may have brushed off but now may help make a connection? Did you have pneumonia or other similar? Did you get an injury or fall? Any meds you took in the past or other problems?
Hang in there
I wish I could offer more.