jsrail: I've just read your note suggesting that maybe the doctor who said I never had neuropathy was correct. I understand the fear that hope can become a belief in miracles, but really, I'm not a miracle.

I have a real sensorimotor neuropathy, with autonomic involvement. Over the past 10 years or so there were periods of great sickness and symptoms, and periods that were better. But the trajectory, putting it all together, was slow and steady improvement.

I always felt best when I was on antibiotics for my chronic sinus infections, and many of us here noted some sort of correlation between infections and neuropathy. When my sinuses were infected, my neuropathy was worse; when I was on antibiotics, I felt more well on all parameters, including neuro.

My EMG/NCS are not as good as the test results I described in the post you responded to, but still, I am much much better.

In the end, my diagnosis is still confusing, but now there is even more hope.
I have tested positive for lyme, and markers of chronic lyme are all positive.
I have been on antibiotics since February, and I can now count 3 full weeks of wellness, including improved neuro function. I have signs of autoimmune illness, but the general thinking is that there was a trigger for the autoimmunity, and it was probably the lyme bacteria.

I can expect at least 12 months of treatment, and I'm finding it easy to tolerate while seeing a doctor who is very experienced in caring for complicated patients as well as chronic lyme.

I have no idea how many of us with "idiopathic" neuropathy have lyme, but anyone who has neuropathy should be tested for it.

I did improve, and hope it continues.

Best to all..

Help!!! Where do I find the program you followed. I don't know what you mean by the stickies?I have suffered from severe neuropathy since 1994. I have a spinal cord stimulator implant, use Duragesic narcotic pain patches (two 100 mcg patches every 72 hours) and have vicodin and morphine for breakthrough pain.
I have just had tarsal tunnel surgery with an implant in my foot which has eliminated some pain.
I lost my right leg due to a blister (I am diabetic) in Nov of 2005 four months after I lost my husband of 3 years to cancer.
I have thought if only I could have one day free of foot pain it would be so great. but I decided that it would not be good - if I ev er had a day free of pain I couldn't bear to go back.
Help.
JudyH

Hi Judy! You're in the stickies. The stickies are subjects of such importance that they're 'stuck' at the top of the board so everyone can always get to them. Go back to the main page of PN and the very first 3 topics are stickies. The one you want is the second topic. That contains a lot of info about different types of treatments and supplements, vitamins and other things that have helped people with PN.

Just to make sure you get there in one piece... http://neurotalk.psychcentral.com/forum20.html
Also, notice at the beginning of a topic it says stickie?

I am bumping this up to update the MetaFolin (methylfolate)
availability.

A person from the company Solgar has sent me a PM saying that OTC MetaFolin will be made by them, and is due out in late June '08 or so.

Methylfolate is available as FolaPro, by Metagenics, but it is very expensive. The Solgar product will not be that costly I am told.

Look for it at iherb.com ...I'll be leaving for the summer soon,
and will not be able to do computer stuff (no electricity etc) so
some of you will have to watch for it.
I'll look for it in September when I return.

Hi Judy! You're in the stickies. The stickies are subjects of such importance that they're 'stuck' at the top of the board so everyone can always get to them. Go back to the main page of PN and the very first 3 topics are stickies. The one you want is the second topic. That contains a lot of info about different types of treatments and supplements, vitamins and other things that have helped people with PN.

Just to make sure you get there in one piece...
Also, notice at the beginning of a topic it says stickie?

thanks Jarret, I wasn't quite sure where the stickies were either. I can't believe I found this site that has many different opinions & suggestions about PN. I've been in pain for about 4 yrs now, on my feet every day, and by time I get home, just want to put feet up to rest.
Frank

Hello everyone - just joined a few hours ago. I've got BAD problems.

My neuropathy is SO bad, I'm taking 800MG of Gabapentin THREE times daily, and it's STILL not killing the pain. I've been usually tied to fitness, but NOW, I don't want to go NEAR the gym.

When I finish lifting weights, my HANDS and feet ache from the moving the weights. If I'm doing chest presses, or any other exercise that involves pushing heavy weight, my hands reek HAVOC! Sharp, stabbing pains all night. I don't know what to do. I can't even teach my child how to ride her bike because I can't run behind her anymore. The pain is SO bad...

I am a Type II Diabetic (un-diagnosed for SEVERAL years). Here's the thing.

I went to my new doctor (hadn't gone in 10yrs since my old doc died), and she ordered up a physical. I only went because I'm 43 and had not had a prostate exam, and my family was giving me fits about getting it done.

She ordered a HUGE battery of tests (10 vials of blood taken) AFTER the physical exam and found my A1C to be 13. Since I had a fear of needles, she agreed to allow me to try and bring my blood sugar down via diet, exercise, and oral meds. I'm below 200 after meals at all times now. But still only around 100 every now and again. Median is about 140.

I spoke to her briefely about feeling a slight pain (like nerve pain) and numbness while running.

I've noticed that as my blood sugars are coming down the WORSE the neuropathy has become!!!! And NOW, the pain is constant.

Next, sometimes depending on how I'm sitting in a chair or lying down, the pain can be worse. Feels like my hands and feet are asleep and then that graduates to stabbing pains. It's horrible.

Now.. can this TRULY be reversed? And what in addition to the Gabapentin can I take. The bitter melon nor the Gymnemma hardly do anything for my sugars.

I need help.

Can you help me - I am computer illiterate mostly. How do I find the page 2 stickies????
This sounds so important & encouraging!!!
Thanks!!!!!!!!!!

You were able to post on this thread?
This is a sticky.

When you clicked on it, you had the option of scrolling down
and READING what was posted here.
If you click the page numbers, that show in the lower right and upper right, you can move along.
You clicked Reply--- it is in the upper left.

I think you should READ here more.
And remember-- all people differ. It depends on what is causing your PN in making a choice as
to what supplements you may need.
Basically there are:
vitamin interventions -- like B12 and Thiamine, B6 and folate
mineral interventions-- magnesium (sometimes zinc), chromium
mitochondrial aids -- like acetyl carnitine, CoQ-10 and r-lipoic acid
anti-inflammatory--- curcumin, fish oil, vit C, other antioxidants
healing oils-- fish oil, flax oil, evening primrose

Drug induced PNs typically need the mitochondrial types
Diabetes induced PN typically needs vitamin and mineral interventions
any nerve damage especially axonal needs healing oils
autoimmune needs the anti-inflammatory agents

Some people need supplements from more than one group for relief.

This is a hint for people who are not confident on computers:
just click on things and see what happens.
To go back you hit the back icon at the top left of your screen.
Do not hit "home" if you don't want to leave here.
Once you do things you will learn faster. Doing is faster and longer
lasting learning than memorizing keystrokes.
This style board is pretty easy to navigate compared to others on the net.
You just have to practice!

i'm dealing with alot of stuff, apparently PN and AN or the biggest problems. i'm 28 feel physically out of wack and not getting anywhere. what program did you follow? i don't know where or what are stickies. i'm new to this.
-thanks

Thanks for the vast amount of helpful information and comment that you've Posted...much appreciated.....

Did the "Supplements" you were taking, Remove or Reduce any "Numbness" in your Limbs that you had acquired because of PN?....I'm interested in trying the Supplement route to try to reduce/remove mine, which is excessive but don't know if my Specific PN type with the balance loss, heavy-fatigue inducing numbness, my Major symptom, will respond....as yours and Liza Jane's seem to have done...which sounds such a remarkable advance for you both and so encouraging to those of us who have been pretty much let down by their Doctors...

I apologise to yourself or anyone going through Posts, if reading the following info, yet again, but I don't know any other way, yet.. I feel that I have to keep Posting, with basic info, in order to explain and learn.....

My PN is: Idiopathic... Non-Diabetic, Non-Disease-Treatment Meds caused and non-Chemo caused....Triggered by repetitive left side physical repeated Tugging 30-40 mins....No Pain anywhere now, formerly in Neck for a few months!!? yes I'm fortunate in that respect...I know...just need a handle on an approach to reducing/removing this numbness and its effects....
thanks....

Ray