Thank you all so much for your replies!
Glen, I live in NY. Dr. Latov at Cornell is actually the neurologist I am seeing and he kind of gave up on me (at least that's how I feel). The reason I am thinking about Mayo Clinic, is because they have a 3 week pain rehabilitation program that sounds amazing, at least in theory (you can check out their website), and I haven't been able to find a comparable one that is closer.
However, I haven't been able to find anyone with neuropathy that has gone to this program, so I don't know how effective it really will be to help manage neuropathic pain.

Joshua, how are you feeling with the meds that you are currently taking?

Rae, thyroid was tested and found to be normal. I'm sorry that that didn't get rid of the neuropathy for you. How are you feeling these days? Have you tried any pain management center?
I wish I could have some humor, but as each day passes, and my hope to live pain free decreases (or at least with some less degree of pain), it gets more and more difficult to put on a show for others and go with the flow.
I have two small children, a wonderful husband, and I just feel terribly sorry for them for having to live with someone with issues like mine.
I haven't hooked up with anyone who has neuropathy, and as much as a good friend/co-worker of mine tries so hard to understand what I'm going through, there is no way I can expect her, or any other healthy individual to be able to understand what kind of hell I'm living in.

I am currently seeing a psychologist because if the physical pain isn't enough, I am depressed on top of it all.

Wish I could be as optimistic as you (and some days are better than others in this area), but today is just not my day

I am just so sorry for someone so young as yourself to be dealing with this crummy illness. I hope you find success with some form of treatment to ease your pain. God Bless you.

jakatak ... thank you.

I'm sorry you are feeling this way as well. This whole nasty thing comes on as shock after shock until you realize all the things you are wondeful new things your body is doing. I think you are well aware of everything now and you are feeling overwhelmed by it as I did. The biggest bit of advice I can give is to find your triggers. What makes your pain worse? I know that sitting a certain way or reading with my head down, or the worst: sleeping on my stomach, elicits the symptoms. As well when I press too hard on something, like typing for a long time starts to agitate things until I start twitching or start getting the electric zaps.

Is there any way when your symptoms occur, that you can think of what you might do that coincides with the pain or uncomfortable? Another example, I noticed when leaning over many times I would start to twitch feel pain and get burning sensations in my limbs. Likewise, I used to be able to exercise without much problem besides some persistent leg pain. Then all this stuff and I had to learn that when I started feeling a certain way, it was time to quit or slow down or adjust. If you can tolerate it, I would get off the meds for a couple days and figure out what your triggers are if possible. Neurontin blunts pain sensations, so you can't get a good map of this without going cold for a day or 2.

As far as taking Neurontin, I had problems as well(made reflux worse, brain fog, other problems, etc). So, I started researching herbal alternatives and found the herbs: Bacopa and Gotu Kola. I took these in tandem for the better part of a year and my depression lifted and was able to think clearer and recognize and work around these triggers even better. Both of these herbs stimulate the neurotransmitter Gaba like Neurontin does, but in addition increase Acetylcholine(good for nerve rebuilding) and Bacopa increases Serotonin(good for Depression) and increases endogenous levels of Antioxidants SOD, Catalase and Glutathione. As well I started using Magnesium Oil(helps build and repair nerves and function and is a muscle relaxer, increases ATP cellular energy, the list goes on and on.) I also take Taurine(increases Gaba, reduces inflammation, detoxicant)

Antioxidant therapy for us is important(what the doctors won't tell you). What I think you eventually want to start taking maybe in tandem with other herbals is R-Alpha Lipoic Acid(the best medicine to treat root of neuropathy)and Acetly-L-Carnitine(increases acetylcholine and cellular energy, most powerful nerve rebuilder). PM or respond and I can give you more information if you need. I think it is ridiculous that doctors don't have any of this information and let people suffer.


This is just from my own experience and research:

In terms of importance for Small Fiber Neuropathy:

R-ALA
Acetyl-L-Carnitine (ratio is 2 to 1 acetyl to ala) (don't take acetyl-l without R-ala)
Magnesium Oil
Fish OIl(get a quality one)
Taurine
Gotu Kola
Bacopa
MSM(detoxify, pain)
B-12
Multivitamin

Hi Miriam Im a New Yawker also from across the river in Long Island City.
There are many medications to take for PN pain and individual ones work for some people and not for others its a hit or miss. Titrate up titrate down its a real PITA. Its important to find a neuro that you can work with and who is up to date on the latest treatments for PN. I have heard less than overwhelming praise for being treated by Latov both online and from people in the NYC area who are or were treated by him. In all honesty to me he sounds like any other schmuck neuro who loses interest after a few tests and passes you off to pain management. There are all too many neuros out there like that. From people ive spoken to if you arent a candidate for IVIG he loses interest. A pitfall of using a research oriented medical center. If you dont fit into their interest they lose interest. There might be a better neuro for you there at Cornell. Glenn knows them you can ask him.

As far as other people knowing about what you are going through, in another thread Melody has posted about a support group for PN that meets in midtown Manhattan the third thursday of the month. There you can meet and talk to other people in person who know something of what you are going through.

Dont feel guilty about your children, im sure you are doing the best you can and as someone who as a kid had a mother battle hodgkins back in the 60's for five years believe me they are happy to have you.

A few months back i started taking Elevil (amitriptylene) at night for throbbing and burning pain at a low dose 25 mg and it has helped with those pains and also to go to sleep and stay asleep. They are very tiny pills.
Oh yeah do you have any idea of the cause of your PN? Take care and hang in there.

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.

AT ANY AGE!!!!
I've had it for 6 years and the great 'guru's aren't always the ones you need NEAR you to treat you? I've seen area wide GURUS AND Local 'gurus' and I gotta admit that after seeing over NINE neurologists? #'s 2 &3 were the ones for me. I got diagnosed IN TIME for an auto-immune condition the first 2 neuros wrote-off to other issues...not realizing that those other issues were a RESULT of the primary one? AND, I kid not! The diagnosis of 'mere' PN was 'found on the internet' BYthe ER DOC! That he said no more than 'I found your problem on the 'net' and I know what to do...and not tell me ALL he found? I'm not a happy camper for the long term. Especially as delayed diagnosis created additional and unnecessary medical problems. Some of them permanent.
Miriam, I am saying this not to scare you, but, with your swallowing issue? [I too hate huge pills?] I think you mite be doing good to get another neuro opinion. Second opinions are cheap compared to total LIFE? Golly, be safe w/another opinion, not SORRY!

Keep at the diagnosis! Keep faith that YOUR BODY is saying WRONG! a LOT?
Keep HOPE that you will find THE doc to help YOU as a person. I was lucky, and super persistent in keeping at finding out what-the-fundge was going on with me? While I could! You WILL Find that doc! I have faith in that and in you - 's - j