Checking in and need some advice
 

Just checking in to see how everyone is doing and to see if there are any new developments on the forefront. My last post was in January, when I was finally diagnosed. One question.....how important is it to find a definitive cause for my PN. I have mixed axonal and demyelinating peripheral polyneuropathy. Both my neuro and PC say there are 4 main causes and the 5th cause is idiopathic. According to both, I fall under the 5th cause. I am happy to report that most of my symptoms are in remission now, since mid December, but I can feel they are starting to return and when that happens, it is usually with a vengeance. Hence, my pensive mood. I am trying to enjoy the moment, but fear what is lurking right around the corner. :Dunno:I say this because my newest symptom is the burning in the feet. I am constantly taking my shoes off because my feet feel like they are on fire. My only PN med is Neurontin 300mg at bedtime. I see my neuro again on 3/11 and just wonder if I should push for a definitive cause for the PN or does it really matter??

As one to another.......I feel your pain and wish I could make it all go away for each and everyone who suffers from this. Since I can't, I will pray and ask God to bestow his blessings on all of his children. Would love to hear from you all as to whether or not to persist to figure out a cause or just let it go.
God bless

Well....some never find a cause. But a cause is worth looking for because if you remove it, you may get better at least not progress more.

Have you looked at this:

1) food triggers? including gluten, and the nightshade family of veggies? Doing a journal with what you eat may shed some light on these. jccgf just posted again, her neuropathy/gluten links...
here they are:
http://neurotalk.psychcentral.com/thread115697.html

I myself get burning from potatoes...and it took me a LONG time (years) to make this connection.

2) evaluate all potential mechanical problems with feet and ankles.

3) make sure you have normal blood levels of Vit D and B12. I just put up another thread yesterday on neuropathy pain and Vit D. A small study, but an interesting one. It is on this page.

4) any vaccines this year? Vaccines may start an inflammatory cascade of autoimmune reactions in some people.

I'll say this, my combined arthritis and PN give very confusing signals to me sometimes. I just started grapeseed extract (again), and at 200mg a day find that my burning is better. I typically use grapeseed for allergies, but lately I've been reminded that the RSD board has used it successfully for their nerve pain. So I searched it again (for Bob's tooth issue) and found many papers on helping inflammation from 2009 on PubMed. So I have gone back to it and it is helping with my night pain.
This last month, my feet were very upset by the constant LOW pressures and storms/snow/cold we have been having.

5) Cooling rubs like Biofreeze really help at night and used daily the antioxidant Ilex extract in it may take down some inflammation.

With all the toxins and other nasty things in us, who knows.???

Melody put up this YouTube yesterday, everyone should watch...after watching THAT PN sort of comes into more of a focus as to why idiopathic may be the final answer:

http://www.youtube.com/watch?v=W5n4HhQr25Q

Thanks Mrs. D
 

I did have a flu shot this year, just the annual, not the H1N1. Because I am a healthcare worker, it is highly encouraged, if you know what I mean. I did have a B12 level drawn which was 521. The only other lab values that were out of whack were EBV VCA IgG Titer IF which was 1:320 and ACE which was 83. I did get a chest X-ray which was negative for sarcoidosis. I generally eat very well, although I do use quite a bit of artificial sweetner. I exercise at least 3 times a week (when times are good) and my weight is in line with my height. Just wondering if I should have the skin biopsy to see if I have SNF or does that even matter at this point? I did watch the YouTube videos, and we wonder why there is so much damage done to both humans and the earth!! Any other recommendations....greatly appreciated.

Well, with that elevated ACE level, you could still have sarcoid, just not in the lungs since the xray was clear. And there are other situations that raise ACE, I am sure you are aware of those.

Until you talk to your doctor about this potential, you cannot do any Vit D supplements without medical approval and supervision.

Truly sobering and scary.

I gasped when my neuro took 15 vials of blood after I had already been screened for SED rate, diabetes, B12, and thyroid.

Now I know what he's after.

That B12 level--
 

--is a little low for my taste.

That EBV reading is likely not that important--it just indicates you've been exposed to Epstein-Barr Virus at some point in the past, like about 95% of us by age 30. Like all the human herpes viruses--EBV is human herpes virus 4--it is immortalized in the B-cells after initial exposure and one gets a certain immune response on testing from then on. There are times that such herpes virus dormancies can re-ctivate, though, and there are antibody patterns characteristic to that--and yes, sometimes this can lead to neuropathy.

That ACE result, though, does bear further checking into.

I have had so many tests looking for the cause. My pain doc said that if he could find the cause of the PN then the treatment of that could help the pain by so much. Unfortunatly I can't find the cause for myself so now it has been about geting pain control. I am sorry you feel your pain is coming back have you talked to your doc about increasing neurontin cause 300 is such a low dose and maybe that may help?