Needing answers...
 

I'm feeling as if I've hit the wall as to what to do next, and can feel despair lurking...

My recent visit to Hopkins was ultimately unfulfilling. I suffer from full body burning which, different from many here, manifests everywhere except my hands and feet. The doctor at Hopkins gave me a paper authored by Dr. Ken Gorson (sorry, can't get the complete link, but it's titled "Non-length small fibre neuropathy/ganglionopathy" in the Journal of Neurology, Neurosurgury and Psychiatry2008:79:163-169), which establishes that this form of PN isn't well recognized, and that 'the pattern of symetric, non-length dependent neuropathic pain...suggests a selective disorder of the dorsal ganglia cells subserving small nerve fibres.' The paper is worth reading (if a little boring) in confirming what you already know if this is your problem.

And that's what my doctor kept saying, 'that's you'. Well, no kidding. I knew this. But there was a disconnect from what I was being told to what was on the page. The doctor said that many times the SFN will grow back, and that with time things will improve. Yet the paper states that a lot of these people in this study were refractory to treatment. This was not uplifting to read.

Since, no improvement has remotely occured (over six months now). Indeed, things have regressed. My phone conversation with my Hopkins doctor this week brings us to the end of what he can do.

It's amazing to me, and ****** me off, how limited these guy are though. I've been to UCLA and now Hopkins, and nothing. They rotely go through the list of medications, and tests, after I demand them, and send you on your way. And it seems no one has been up on the most recent research. Just empty.

So now after voluminous blood tests, multiple MRI/a's of my brain and spine, multiple EMG/NCV tests, an LP, lumbar sympathetic and stellate ganglion sympathetic nerve blocks, positive skin biopsy and a one-day ketamine infusion (I realized that this was the edge of the envelope of current treatments, and figured let's go there as quick as possible), I'm exactly where I started a year ago. A lost year. The only improvement is that you get used to living with the pain. And I sit here obsessing, what test did I miss, what test needs still be done? There has to be an answer, or rather a better answer, than I've received thus far.

My current doctor is a neurosurgeon who was a researcher at UCSF, and we've been discussing the research into NA channel blockers, but any non-intrathecal pump drug is a ways off it seems. I've just started on Mexiletine. This after cycling through Neurontin, Cymbalta, and taking 600mg a day of Lyrica along with Baclofen, but the pain continues, with only Tramadol relieving the pain a little, but I try, as much as I can, not to take the plunge.

So I'm feling at a loss.

MrsD, I'm a long time reader of your posts and have been taking ALA, Acetyyl L-Carnitine. along with magnesium and taurine (more recent additions) and B-12 every day as per your erudite reports. But it's just amazing to me how little we know medically about this nonsense - rather horror - and it's not acceptable. It really isn't.

Finaly, my pain doctor here in LA is close with Dr. Anne Oaklander at Mass General and suggests I see her. Anyone with experiences there? Any reasons to go see another doctor, however well regarded, who will go through their limited repertoire which I, an everybody at this forum, already knows?

Thanks for getting through my rambling.

-- Dennis

Hi, Dennis...
 

Have you explored gluten intolerance?

Glenntaj here had diffuse burning and found he was gluten intolerant.

Seems he has improved some with following the gluten free
diet.

Have you explored that possibility yet? I hope he sees this post and
replies here.

It has to be very frustrating for you.

Do you have redness and flushing? Or only pain?

Honestly and truly?
 

You are certainly going to the lengths many others would envy to try and get a diagnosis! And, well, it mite not be what you want to hear? Please remember there are over 200+ neuropathies and treatments for most of them are limited. Choices of various meds are about 50+, and other therapies should it have immune implications are down to about five?
That doesn't mean that the docs [if competent] aren't trying? Those not competent wouldn't admit it anyhow..so there. I've been that route as you obviously have.
There is an absence but for few, bits of research about how nerves die, then, if and how they regrow. Most of it is being done on sea animals and rats. I sure wish I could be more encouraging in this quarter? But, know that nerves can and DO die rapidly, but can take YEARS to regrow. Lots and lots of patience is required.... kind of like nuruturing the perfect tree in your yard or a special plant in your house. It is NOT gonna happen overnite!
It's good to see that you seem to have had extensive tests, and as one dear old 'codger' of a neuro would say: That's off the 'lists'! Diagnosing many PN's is truly a process of meticulate elimination of other things. Lots and lots of them! Please review the 'Sticky' important information. Lots of good stuffs there from many here.
Soo, while you are 'basking' in the pain, and chewing on the wood in your furniture? [I've tried, wasn't good on the teeth?] Try the different 'meds menu' and see if something just works? I tried to make friends w/my pains? And well, they just went and kicked it up notches. So I quit that approach.
Mrs D is right to suggest the gluten aspect.... Cutting it[some things?] out or down, is kind of like being a diabetic in that it doesn't have to be blatent? Just some changes... Here is the forum for it here, I am sure there are other sources as well.... http://neurotalk.psychcentral.com/forum13.html I believe this is often called 'lifestyle changes' Blah! But, they can and do work for many. Good luck and keep us all up to date! - j

Wow...read your post and sounds close to what I have....awaiting skin biopsy. I have skin sensitivity in a lot of areas (for instance after I scratch, the sensation remains longer if that makes sense). However, interesting that you did not ask your doctor re the tone of that article, or rather the refractory piece, and the fact that he just thinks the nerves will regen.

I am seeing Dr. Latov in NYC who is one of the leaders in PN, including systemic causes. Perhaps your Docs can bring him in on a consultative basis.

What I am finding is that a lot of Docs are too arrogant to admit what they dont know, and are clueless as to telling you what the next steps are. Dr. Oaklander is a CRPS pain specialist so that might be great as well.

Feel better soon...

Markl

Allowing time to pass and acceptance....until the nerves regen somehwat I guess is key. The body sort of adopts to the pain, but I can't imagine it is easy.

Most of these drugs are Horse(*&, and maybe abate things a bit. Some folks are lucky...but it looks like you have to go through the cocktails to find the combo that works.

Ultimate the solution will be a genetic one (gene therapy). However, at the rate of trials and research, I expect something like that is at least a couple of decades away. By that time, there will be many new drugs...I expect within the next 5 years you will see new pain meds, perhaps working on different mechanisms. The only reason for that is that there is HUGE coin to be made by Pharma...so they will continue to pursue.

Mark

I can certainly relate.
 

I was struck with an acute-onset body-wide burning painful neuropathy in April of 2003; while it did start in my right foot, it climbed into my hands within three days and was all over my body, toe to crown, in ten days.

One can look up more posts I've made if one is interested in a lot of the details of going through various docs and neuros who had no idea what was going on with me, how I had more than a hundred pages of normal or negative tests, how I was accused of faking/malingering, and how it took me 3+ months until I wound up at the Cornell-Weill Center for Peripheral Neuropathy, at which a skin biopsy finally provided evidence of small-fiber damage and vastly reduced intraepidermal nerve fiber density (2% of normal).

My skin biopsy results did not show the usual length dependent gradient--I showed considerable de-enervation at ankle, thigh, and elbow. This was certainly compatible with my symptoms, which were all sensory and did not involve any appreciable numbness, but excrutiating burning pain (I was fortunate Neurontin controlled it to a great extent). No explanation was ever found for my situation, though a post-infectious autoimmune molecular mimicry process was suspected. And, yes, one avenue of exploration led us to the idea that this was a ganglionopathy, as described by Dr. Abhay Mogehkar at Johns Hopkins--a selective attack on the sensory dorsal root ganglia from which the small fibers that subsume pain sensations arise. I actually corresponded with Dr. Mogehkar, who said he'd seen about a dozen cases like this, and that while such an acute symptom pattern was suggestive of ganglionopathy, there was no direct way to tell, as MRI technololgy was insufficiently precise, biopsy that close to the spine was not a good idea, and confirmation awaited my autopsy (a bit of neurologist humor there).

There's not a lot of research on this type of syndrome. The few reports seem to indicate that such an occurrence is monophasic, not progressive, at least after the first few months, and that regeneration depends on the extent to which the ganglia are damaged. Totally destroyed ganglia cannot regenerate, but if some nuclei are damaged yet others spared, it is possible to get slow, partial recovery over years, with some symptom reduction, as undamaged nuclei may sprout new axonal connections to take over for those that are lost. This regrowth process is in itself often painful, and produces a lot of parasthetic "sensation weirdness" until the brain learns to interpret the re-wiring. (In this sense, the recovery process is analagous to that which may occur due to incomplete damage due to moderate B12 deficiency.)

I do seem to have experienced a considerable degree of recovery and symptom reduction, to the extent that I'm bothered more by my C6/C7 right radiculopathy day to day at this point. I am still prone to flares, though, and I'm highly sensitive to compressive forces, which cause far more neuropathic symptomology than "normals" would get.

Though I never had a positive gluten-sensitive serology, I did go on a gluten-free diet and do believe this helped. Of course, I also take major supplements (methylcobalamin B12, fish oil, R-lipoic acid, other B-vitamins, magnesium citrate) and try to eat a Zone type diet with very little processed sugar or other carbohydrates. They key is not only to optimize the conditons for nerve regeneration, but to avoid known nerve toxins and excitatory irritants (and sugar and gluten are certainly among those). I also have never smoked, or drank alcohol, which hopefully contributed to the optimization.

I empathize with your situation, especially with the uncertainty. It is certainly hard to tell, if one does have ganglion damage, how far it extends and what capacity one has for healing. All I can say is to try to mitigate symptoms and provide as optimal an environment for re-growth as possible (I certainly don't agree with those doctors who believe that the situation is inevitably degenerative).

mrsD --

I'm going to pursue the celiac angle stronger in the coming days. Besides neuropathy, I've many CD symptoms (some for decades).

My initial blood work though - all IgA's/IgG's/IgM's, etc. - has come back negative. But I am going to get/insist on an endoscopy as soon as I can; maybe the genetic test too.

In the mean time, I've gone 'gluten free' (though I will have to fatten back up on gluten before any endoscopy), which is actually a hard thing to do. Not necessarily taste-wise, though palate adjustments need be made, but difficult in tracking down all those endless ingredients floating around in stuff.

No redness and flushing here (things can always be worse I guess). Just pain. Lots and lots of burning.

Thanks again for all the info on supplements and the like. It's a good thing you're doing out there.

-- Dennis

Ah yes, I too tried, desperately, to 'make friends' with my pain. Anything it wanted. Now I've evolved to just wanting to beat the **** out it. We'll see how that goes...

And thank god for those sea anemonies, huh. And the tarantulas. And that apparantly insanely unique gentically family in Pakistan, chemically comprised the way you and I wish to be altered. Research them all... Just faster.

The problem with waiting, with patience, is that I realize just how much I have changed, just how much less I am from what I was. And that's a bad place to wallow.

Thanks for you post. A few lines of support is a good thing to have.

-- Dennis

The reason I ask about flushing, is that Serotonin excess can cause burning too. Excess serotonin is made by carcinoid tumors in the GI tract (and some others, which may be in the lungs). This symptom is hard to pin down. People with carcinoid also have diarrhea, and wheezing. The wheezing comes latter when the tumor(s) metastasize.

Have you tried blocking the burning with AlkaSeltzer? This trick would reveal if the burning was allergic-histamine driven.
If you can take aspirin with no contraindications try it.
The buffering in the AlkaSeltzer blocks some receptors in the skin. But it is only temporary.

The last time I had the flu...about 3 yrs now, which was quite mild...I had burning all over for a few days. But it stopped as soon as I started getting better.

I would certainly avoid MSG at all costs. This artificial glutamate stimulates pain receptors. I have problems with it myself!

Keep us posted...I will continue to search around, like I always do.

For example, the people who are damaged by the drug family fluroquinolones (antibiotics), are now posting that IV glutathione helped. We have a member here that is going to get IV nutrients this way, and will keep us informed as to her success.
her thread:
http://neurotalk.psychcentral.com/thread68062.html

I don't have much experience with this treatment. But I have talked to patients with Fibro and similar chronic pain/fatigue frustrating problems that improved with the IV supplements.
Dr. Jay Cohen MD has posted recently on his website about IV glutathione and fluroquinolone side effects:
http://www.medicationsense.com/artic...ity070508.html

If anyone ever accused me of faking or malingering, they better do it over the phone. Doc or no Doc, he is getting laid out. And I have not had a "fight" since the 8th grade or so, but this condition is obviously very real.

I don't have the burning in my trunk. But the arms, legs, and head do sizzle. "sensitivity" on the face and other areas where I scratch, I feel it more intensely. I think the amygdala becomes more overreactive in this state, adding to the misery. Skin Biopsy tomorrow....Anyway, DShue....you should definitely listen to glenntaj...he is better versed than most neurolgist. Mrs. D on the vits etc is extremely well versed as well. Like Glenntaj, I am using Dr. Latov now, since the parade of Doctor's was getting to me. The only thing they have not told me is that I am pregnant. Maybe because I am a man.

Wishing you the best,

Mark

. The only thing they have not told me is that I am pregnant. Maybe because I am a man.

And I was told by one of the doc. here that it might be a prostate cancer... and I' a female....

LMAO....not at your expense....ok it was.....but you would think that at least one of the courses in medical school would involve how to distinguish between male and female. Funny stuff!

amazing...
 

but I also have a strange story...

I had a patient not too long ago who was on chronic pain
opiate therapy. He suffered a hyponatremic episode (low blood sodium levels) and was sent to the ER.

They proceeded to put him in stirrups to do a GYN exam!

You can imagine how angry he became! (I heard this story
from his wife, when he was finally sent home).

Mark,

It seems you read the article referenced http://jnnp.bmj.com/cgi/content/abst...128801v1?rss=1 (here's the abstract of the study on those with full body SFN not including the hands or feet;sorry for not supplying this in my original post).

I'm with you brother; I've no hesitation in issuing an appropriate beat down when necessary on benighted medical professionals. While I actually look forward to issuing one physically, verbal bruising feels just as good.

I'm familiar with Dr. Latov. Read his book. I was able to eliminate the big causes pretty quickly. So my hope lies in the endless rapacity of big pharma. But as to sheer numbers with respect to our specific SFN, our group isn't massive with respect to their big coin bonanza expectation. I fear we will be waiting...

If I remember right, you had a blood clot? My downfall started with gall bladder surgery. The burning spread from my abdomen, to my arms and legs, my back, and then finally my face joined in within months (all the while I was told it would stop, not spread, etc.). It would be great to talk to everyone who had a trauma as their inciting incident to this hellish situation. Compare notes and the like.

Oh, I think you also mentioned ketamine in a post. Because of a surgical beginning, this lead me to an RSD angle. Like you, I don't have any other signs - disoloration, temperature changes, etc. (very thanfully - I spent the summer reading on the utter awfulness of RSD) But I was agressive in pursuing ketamine as it seemed the closest thing to dealing with the burning problem, a way to 'reboot' the CNS and stop the madness.

Let me know if you go that route. I can fill you in further on what to expect.

-- Dennis

Here is something Doc Oaklender wrote...not exactly uplifting....but at least she is aware of this stuff....

http://sageke.sciencemag.org/cgi/con...act/2006/6/pe7

Yeah blood clot....I do get the occasional freezing limb....but that is part of SFN...cold bothers me....I am not sure ketamine is the answer...but u should speak with Oaklender....another big brain....but I would say to her, is the advice and treatment about the same as, oh say, 1955?

Be well, hang in there,

mark

Ezekiel Fink is the guy who did the skin biopsy on me. Besides having one of the coolest names I've come across (I'm a writer; names are big), he looks exactly like Seth Rogan, which wasn't exactly reassuring when he walked in...

But he's a good guy/doctor.

-- Dennis

[QUOTE=mrsD;438726]The reason I ask about flushing, is that Serotonin excess can cause burning too. Excess serotonin is made by carcinoid tumors in the GI tract (and some others, which may be in the lungs). This symptom is hard to pin down. People with carcinoid also have diarrhea, and wheezing. The wheezing comes latter when the tumor(s) metastasize.

Have you tried blocking the burning with AlkaSeltzer? This trick would reveal if the burning was allergic-histamine driven.
If you can take aspirin with no contraindications try it.
The buffering in the AlkaSeltzer blocks some receptors in the skin. But it is only temporary.

The last time I had the flu...about 3 yrs now, which was quite mild...I had burning all over for a few days. But it stopped as soon as I started getting better.


mrsD

Re: Serotonin. Wow... Is the excess serotonin the stomach variety, and not brain variety, enhanced by SSRI's (which I've taken for years)? Or are they one in the same? In any case, I'll bring it to my doctor. I'll try the AlkaSeltzer too. Thank you.

My first full body burning came about after a ten day flu. I went for a hike, came home and started burning. The drugs do help a little now, but ever since the burning flares much higher after eating and after any physical exertion. Which is a real drag because I used to go the gym every day (really) for decades, and now I've became a flabby guy...

-- Dennis

I messed up my response to your post. Sorry to all for having to read this drivel twice...

mrsD --

Re: Serotonin. Wow... Is the excess serotonin the stomach variety, and not brain variety (I've taken SSRI's for years)? Or are they one in the same? In any case I'll bring it up to my doctor. What is the appropriate test/blood work? I'll try the AlkaSeltzer too. Thank you.

My first full body burning came about after a ten day flu. I went for a hike after getting out of bed, came home and started burning. Ever since the burning flares after eating and any physical exertion. Which is a real drag because I used to go the gym every day (really) for decades. Now I'm just a flabby guy...

-- Dennis

Fear Factor or Mixed Martial Arts...either seems to go well with the disorder....you should ask him about the article when you meet with him. I like to know if I should order my colostomy bag and Depends now....these Docs are great at shooting out problems...not too good with the solutions.

one thing they did say boss, is that exercise is imperative in that article. Burning body and all, you need to move...I am 300 pounds and burn, and I do it.

I looked up Ezekiel. I got suits older than that guy.

Until they figure out a drug cocktail or something that works, I think you want to look at an attitude of submission, resignation if you will. Even with the pain going on, otherwise you get into the fear-adrenaline-fear cycle, and you will be shooting out cortisol, compounding the problem.

A writer huh? I was a lit grad student at the University of Chicago, way back when. Studied with Saul Bellow...another guy whose brain is too big....anyway, I realize my talent was not in that realm....was going to be a prof...ended up in computers...go figure.

Alka Seltzer? That is awesome...I gotta give that a shot....

Be well,

Mark