Believe me, Miriam, I DO know the depression thing. My heart is screaming out to you.....the hardest part of it all is the GUILT that goes along with this... I hate what i've become to my husband.....my kids are too young to comprehend the true scope of this battle, mainly because i tend to 'hide' away in my room so my saddness won't 'show'.... I've turned my friends away because i'm too
embarrassed to be this way. I used to be a fun and outgoing person. This crap has completely devastated my entire life.......
I'll be point blank honest, i have entertained the thought of ending it all, but could never bring myself to actually DO it......so i thought of the elaborate plan of hiring a hitman to do it FOR me......now how awful is THAT. oh the battles within! And then of course comes all the SHAME and self-hatred for even thinking these things! I've beaten myself up emotionally because of how selfish and degrading the thoughtlife can get....
I could go on and on, but i'm sure you catch my drift....
i guess my point is to let you know that YES this PN crap can completely take us down.......I'm so glad you are reaching out for professional help emotionally as well as medically. That right there shows what strength and determination you have to fight this thing. You're doing it for your family. I will be praying for you please know that.
I've been known to try and 'hide' behind humor when actually i'm more down than ever before, so maybe it comes across as being too 'lighthearted' i suppose..... i must admit tho....these 'smilies' are fun to play with but i guess it's just that i've spent wayyy too many days living in a black hole and feeling as tho life is over....

Yes, i've been in a pain clinic (2 actually) for several years and i'm right around the corner of making the most drastic decision i've ever made.....getting the spinal cord stimulator implant.
I know the pain is the worst part...and you said you don't like pills.....have you considered the 'patch'?? That's the only thing that has kept the pain at bay to where i haven't totally lost my marbles.....but i'm tired of opioids cuz they have their own negative perks, thus my decision to bite the bullet and get the SCS implant. Whatever it takes to take away the pain.....that's what the meds are for....
well, i've gone on enuf....i've never spilled my guts to this degree before, but your posts have really struck a chord....plus you being so young.....
SO not fair.....
Vent all you want.....that's what this is for...

Keep the Faith
Rae

As i re-read your first post i see that you DID try a patch (Lidoderm). I am referring to the Fentanyl patch.....very powerful opioid. They come in all doses. Maybe your doc would be open to try you on it. It helped me to say to the doc that "My pharmacist said to ask you...." Some docs don't like to be flatout asked for opioids. But you truly are suffering and that's what the dang meds are FOR. I hate uptight docs when it comes to pain....
Another thing, some of my issues are 'female' related .....hormones and such....
feel free to send me a PM and we can talk on more of a girlie level without the world wide web reading......
Also, consider asking about glucose levels and metabolic neuropathy......they play an important role in finding the underlying cause so hopefully not to have to take strong meds for too long.......
At first i 'poo-pooed' those terms, but turns out they may be right up my alley....

Truly caring....
Rae

--of someone who's gone to Cornell-Weill for a long time, I think part of the problem with Dr. Latov--who I've had interesting discussions with, By the way--is that he runs the research arm there, and most of the research is dedicating to metabolic (e.g., diabetic) and autoimmune forms of neuropathy. (He's also getting older and suffers from a likely autoimmune neuropathy himself, so that may factor in.)

As for clinicians, I'd probably go with one of the other people running around there if you can (Dr. Chin is my primary neuro.)

I will say, though, that the Cornell Weill people were among the few that didn't treat me like I was a weirdo--or a psychiatric case--with my acute onset body-wide burning neuropathy symptoms, which too many other neuros had.

I'm sorry if you did not have the greatest experience there. It is certainly true that far too many neuropathies show negative on all reasonable tests and remain stubbornly "idiopathic", though hereditary, metabolic, or autoimmune mechanisms are often suspected in those.

Miriam
I'm sure you are aware, but just in case you're not....there are VERY positive threads and posts in the stickies at the top of the PN section....especially the one entitled "Neuropathy DOES improve".....
I keep a notebook handy and jot down the herbal cocktail suggestions, Liza Jane charts are good to print out and incorporate it into your own personalized 'journal' of your battle, and any other pertinent prospects of improvement....That way, you'll feel more organized as oposed to overwhelmed. Keep notes of people's successes, even if they don't actually work in your case....this way you're building up a battle plan to stay above the depression cloud that constantly tries to bring us down. Make notes of websites that seem to target your symptoms.....just ANYTHING to stay afloat.
This thing will NOT get the best of us !!!! Amen ?
Ok, i'm outta here....for now
Gotta run.....the kids are hungry !
As always
Rae

Thanks guys. There is so much information out there, and a lot of it may be good information. I just ... how do I put this, have zero strength right now to research any more. I know this probably makes no sense to most people. After all, if there is something in those stickies that could potentially help me, shouldn't I be interested in reading it and jotting things down? At this time (maybe the depression is really getting to me) I have just about given up, even though I know that there is absolutely no way I will get better if I have no hope. I'm making no sense with all the above, I'm sorry, I'm just having so much difficulty concentrating right now.
Thank you all for your replies.

Glenn, how have you been helped by Cornell? Are the meds that you are taking helping you? How long have you had the neuropathy for and what are your symptoms? I have yet to find (and hope I don't) someone who is experiencing this burning pain, and very achy muscles in their entire body. It seems that most people either have burning feet, toes, or some small part of their body (and I don't mean to minimize anyone's excrutiating pain). It's interesting that you mention Dr. Latov having neuropathy himself. Has he told this to you?
Again, thanks everyone

Miriam, some of your depression may be reactive...and some may be due to the Neurontin you are taking. Have you discussed with your doctor, taking an antidepressant? Recently there have been newer studies on Elavil showing that this TCA antidepressant can actually help heal at the peripheral level. Other antidepressants did not show this trait. Elavil may be something to consider.
Here is the link to that thread:
http://neurotalk.psychcentral.com/sh...=amitriptyline

Have you had tests measuring your Vit D and B12 levels? Both help with recovery. Low Vit D has been shown to increase chronic pain.

--which has certainly been useful for many for both it's neuromodulative (pain dampening) properties and its anti-depressive properties.

I am currently on no meds at all, having weaned myself off gabapentin two years ago (at one time I was up to 2400mg/day, but I'm a big guy)--I was lucky it worked for me at the height of my acute-onset (hours/days) body-wide burning neuropathy attack, of which the only evidence was small-fiber de-enervation upon skin biopsy through Cornell-Weill, which still follows me as a case and has tracked me with subseuqnet skin biopsies that show slow but definite re-enervation. (A presentation like mine is rather rare--there is a researcher at Hopkins, Dr. Abhey Moghkar, who speculates such acute-onset body-wdie syndromes, of which he's encountered about a dozen, involve a selective attack on the dorsal root ganglia, and are sort of the small fiber equivalent of Guillain-Barre syndrome.)

I'm on a lot of supplements, though--vitamin D3, methylcobalamin B12, B-comples, magnesium citrate, R-lipopic acid, lots of fish oil.

My daily symptoms now have more to do with an unrelated right side cervical (C5-C7) radiculopathy, secondary to a rhomboid muscle tear and hypertrophy of the spinal processes--the tingling and numbness in my right hand/fingers/arm is very different from my original burning symptoms. I may have to bite the bullet and get a foraminotomy one day soon. I also have a pelvic/sacral twist, and a left leg two cm shorter than right, which tends to result in impacted nerves in the sacral/sciatic distirbution.

I am still prone to flares and very vulnerable to compressive symptoms, though. Some of this may be due to the fact that as I've slowly re-enervated (my original neuropathy "attack" was quite acute--hours--and peaked over some months, then began to recede--it appears to have been a monophasic event), the fibers grow in different configurations than they were originally, working around muscle and bone, and so are easily compressed. I get tingles/shoots/electrical things that start up suddenly, hang around hours/days/weeks, then depart just as suddenly. Sometimes I get these after exercise--even engorged muscles can set them off.

What Cornell-Weill most gave me was a comprehensive testing framework, very thorouugh examination (I've never has less than a half-hour appointment there, and my first intake appointment ran two hours, with the physical being the most comprehensive I've ever had), referrals to other specialists (met a great endocrinologist the Center collaborates with in research who has an interest in neuropathy), the ability to do skin biopsy, and the sense I was being believed--too many doctors before that seemed to think, with all the "normal" test results--very common in small-fiber syndromes--that it was all "mental".

It is true that I'm an interesting case for them--and that my knowledge of the field and the research (all self taught) is on a par with the docs there--probably why I get to have these discussions with Latov, Sander, Chin, etc., and yes, Latov has mentioned having symptoms of vasculitically based neuropathy. (He's not the easiest person to talk to, but I can say things like " how did your work on nerve autoantibody lead to the development of your ganglioside agglutinin test", so that may be part of it. And they're used to seeing me around there for follow-ups, subsequent skin biopsies, and the like.)

Currently, my original neuropathy is considered to be slowly resolving, though I don't know if I'll ever be symptom-free (the research literature that there is on this type of presentation, admittedly sparse, does not seem to indicate full recovery). I'm still officially idiopathic, though post-infectious autoimmune molecular mimicry mechanisms are the leading theory for what happened.

Some questions:

Do you have Acid Reflux as well? When do you burn the most? Can you discern any rhyme or reason, bending, stretching the neck, twisting the hips that aggravates or makes it worse? When you wake up in the morning, do you wake up burning? When does it start? When does it stop and can you do something to make it stop? If I stop moving for awhile and either sit or lay down it slows and will eventually stop. If I lean over and or lay down on and put pressure on my stomach, it goes crazy and hurts bad. Looking down for a period of time or craning my neck to one side or the other fast will(feels like tears something in neck) and then symptoms. Is there any pattern you grab from this. I found my pain worse on Neurontin because I was ignoring all my triggers and doing stuff that kept the condition aggravated. Have you tried Alpha Lipoic Acid and Acetyl-L-Carnitine?

Glenn, you spoke of one leg being shorter than the other. I have scoliosis, and always had a lot of back pain. While going for therapy after knee surgery, my therapist suggested I wear a heel lift to bring my pelvis level. That was 4 years ago, and it has worked for the back pain. My daughter-in-law also has scoliosis and back pain, and she now uses a heel lift to get relief. (I even have one in my slippers) Joan

--we've been experimenting with lifts on the left side.

Been using different thicknesses and "sponginess/give" levels, trying to find an optimum situation. One thing that's annoying is that the lifts tend to move around in the shoe as one walks, not staying that well under the heel, and I've been trying to rig a velcro or other non-permanent fastening system for that, as one doesn't want the lift permanently attached, so one can shift it into different pairs of shoes.