I feel your pain! This sucks! I took in Liza Jane's checklist and told my neurologist I wasn't going to be satisfied until every single thing was crossed out. So she went down the list and finished up what was left on the list and guess what, they said everything came back (you guessed it my most hated word) NORMAL! I am about your same age and feel as though my life is slipping through my hands and I want something done. I don't know how long I can live feeling like this, people shouldn't feel like this until your 80. I have had 230 blood and urine test. Brain MRI, full body CT, ultrasound of my abdomen, neck and heart, 3 chest x rays. I came to the realization that doctors are taught a certain thing and that’s what they go by. If it’s not simple or something they don't see every day than they just don't know. The best things you can do is to try and bring things to their attention to search for. Find a doctor that just doesn't have a clue but is willing to try. My family doctor didn't have a clue but would entertain directions I would go to and would allow me to be tested for it most time without even being seen by him. I am very humble by the fact that I found some hope for me and am waiting a surgery that will hopefully fix me. Until then I suffer (unless I starve myself and my neuropathy is lots better). Anyways what supplements are you taking? I got more help from supplements than anything. I started going down the list finding what supplements helped with what type of neuropathy and would try them to see if they helped. It was $$ but I didn't care (if you find some that you might want to try but don't want to buy I may have it that I bought and made things worse that I could pass along). I said I would eat dog poop if it made it better. Come to find out all I have to do is starve myself and the pain goes away. Also boosting your antioxidants (if you need some reading on it I can send you some links) and vitamin levels (I stay away from supplemented b6 even in breakfast cereals as it inflames my nerves) is a good start and won't hurt. I also tried changing my diet cutting out gluten and sugar. Both helped me, it was hard but not as sucky as feeling like I am being poked with needles all over. Also just remember, it can always get worse and there is someone out there that is dealing with this that is worse off than you. I didn't think it could until it started affecting my heart. It went from sucking to scary sucking.

Thanks Lewie, I talked with my neuro the other day. He doesn't seem aware of the full lists of tests. I told him I'd be ok with waiting for the nerve conduction study before preceding with further testing

I'm taking most of the common supplements. R-lipoic, Acetyl-Carnitine, Benfotaimine, Coq10, D3, B12, B complex. a few others I can't think of off the top of my head, along with gabapentin and nortryptiline.

I can't say I've improved, more like my symptoms are changing. Burning, aching, freezing, sensitive skin, broken toe feeling, stabbing. It all seems to vary day to day. Some are better than others.

Hope you get some relief. My feet are the worst. Can't walk or stand more than a few minutes which is really life changing. Hang in there!

I take all my B vitamins seperate than a b complex to avoid the B6. Something to think about. I also found I didn't get along with very much benfo, B5 and Acetyl-carnitine. All made my pain worse. My pain is different every day. Its a crap shoot to what its going to be like or feel like each day. I get relief from R-lipoic but it started making my heart go weird. I noticed your not taking magnesium. That is the number one thing that helps me. I take Mag64, the generic version of slomag. I HIGHLY recommend it. I was taking 4 a day but had to taper off to 3 cause it was also messing with my heart. If it didn't bother my heart I would eat 6 a day and would propably be pain free. Also I take all my pills at least 30 minutes to an hour apart to see how I feel after each one. That narrowed them down for me.

This can be tapered as well. Instead on one every day, mayhaps one every other day, skip every third day, etc. I haven't seen any capsules smaller than 100 mg, but I haven't seriously looked. Splitting/reducing capsules can be a messy PITA, but it's not impossible/undoable.

Shame those others didn't work out; did you try smaller/different dosing there as well?

Doc

I can empathize with your frustrations, pain and sorrow and everything else associated with IPN. It's an extremely frustrating process to say the least, the tests and even worse, the waiting! I am almost two years since the onset of my symptoms and I have been down the road of test after test, spread out months apart. In fact, most of the past two years I’ve spent waiting, mostly in bed as my symptoms worsen, many days in agony with prescribed meds that don't work for me. I go back and forth between not taking anything (other than supplements), to desperately needing these drugs that alter my ability to concentrate. I also get the broken toe symptom by the way.

I’ve switched neurologists three times out of frustration and desperation. All of the waiting and no expressed urgency by anyone to get down to discovering and treating my underlying cause. I read about neuropathy every single day, I try to educate myself to find my underlying cause, determine my triggers, good and bad. and maybe, hopefully, find my own "cure". By the way, I too suspected alcohol but my doctor says no. I don’t drink anyway as it is not good for nerves and mine need all the help they can get. I do have acid reflux and was on a high dose of Nexium for 10 years along with a vegan diet and I was not taking any vitamins which could be a more likely cause but again, not confirmed.

My testing: 3 neuro evals, 3 EMG's, 2 MRI's (brain w/ & w/o contrast), 2 MRI's (cervical spine), EEG, skin punch biopsy, lumbar puncture and gallons of blood work to rule this out, rule that out and arrive at my dx of...wait for it...IPN! I am no farther along than where I started (other than low Vitamin D). My doctor who is a private concierge MD that I hired to coordinate my care and help me to communicate with my neuro and get to the bottom of all of this appears glazed over when I tell him I'm not giving up searching for the cause. His response: "You need to come to terms with and accept that we will likely never know the cause of your IPN". And that’s where I am now.

This is all my experience so far. It doesn’t mean it will be yours. Keep doing your testing and ruling out and I hope your process goes better and faster than mine and that you determine your underlying cause. It’s also important to keep in mind that there is surprisingly very little they can do for PN. The treatment protocol is to manage symptoms, that's it. You do have to be your own advocate and find what works best for you. And what works for you may not work for someone else since we are all different and so is our PN.

That all said, I too am desperate for relief so I can live a somewhat normal life. There are drugs in the pipeline that could replace these off-label meds to better manage symptoms while our nerves regenerate on their own. One such drug is Clonidine gel. It is in Phase III trials with good results. Compounding pharmacies already make it and that’s on my short list (the cream I'm using now does not contain Clonidine). I think the pricing will be better too. For OTC, try Salonpas Deep Relieving Gel. It is just as good IMO.

Thanks for mentioning this. I just receieved some lyposomal R-lypoic and was mad cause it wasn't cheap. But I will try spacing it out. I tried the acetyl many different ways, every time it either did nothing or made things worse. I spaced out the benfo and the b5 and they didn't makethings worse but didn't seem to do anything. I still take them once or twice a week.

Titrating to find the correct dosage/balance can be a challenge and frustrating. I could never get ALC to work either, and I didn't seem to fit the profile for Benfotiamine. B5 has been tricky right along. With regard to PN, the study found it worked in conjunction with RLA; it never determined—or tested—whether it had any effect alone, so if RLA doesn't work for someone, I don't know if there's any reason to believe B5 will be of any benefit. OTOH, B5 has been shown to have potential/promise for a lot of things, so who knows? It might not address the burning pain (as is the purpose for taking it with RLA) but it may still provide some other benefit (e.g. lowering bad cholesterol & triglycerides) that may take longer to recognize. Dosage is another issue; fortunately, like B12, B5 has no known tolerable upper intake level, so there's ostensibly some wiggle room.

IMOE, B5 didn't work as fast as RLA (which worked for me almost immediately) but after a month or two—upon reviewing my pain journal—I noticed a definite difference. It also helps keep flares of cystic acne under control.

Doc