.....I experience your same symptoms body wide. Mine came on about April , shortly after my diagnoses of type 2 diabetes. I was pre-diabetic the prior year (2005). My dx is small fiber sensory neuropathy according to my neuro. Have you had a glucose tolerance test? I would be curious about the results ,since fasting glucose does not give you a complete picture. Also you might want to take a second look at your b-12 level. What is referred to as normal, certainly did not work in my case. I took the advice of Rose on this board and started Methyl B ,it improved my fatigue within two weeks ( I mention this because your mood states tired. The docs seem to think my neuropathy is due to the high Glucose. I am not convinced ,so I am still checking it out. Stay tuned--you will get some good info.

Ok i just wanted to freak Mel out. Because you will see i'm bad i live
in Mo. and it's hot ,i was terriified because my son lives in MN. And i'm nuts.
Really i had just about everthing your talking about,but i have polyneuro
apathys. Which means more than one reason.,as you may have.
I have a feeling you might have thyroid promblem. But if Rose is around
or Shelley is around they will jump in. Wel welcome to our world but don't
worry go from day o day and good Luck,keep coming back. it
will scare the tar out of you st first. . Sue

Sue, you crack me up!!!

mel

--is what is called "stocking glove"--symptoms appear first in the parts of the body farthest from the center, due to the fact that in chronic, slowly progressive neuropathies, nerves tend to "die back" from the parts hardest to get nutrients/oxygen to and toxins out of--it's hardly the only presentation. Many people, especially those with with acute or sub-acute onset, report symptoms in various other parts of the body. I am one of those--my acute onset burning small-fiber sensory neuropathy did start in my right foot, but spread to almost every corner of my body within ten days. Though it took me months to get to specialists at Cornell-Weill Center who actually 1) did not discount my symptoms, and 2) could test for damage to small fibers by skin biopsy, which confirmed widespread damage to those fibers which subsume the sensations of pain and temperature, I was fortunate that the Neurontin I was put on did start to work quickly enough that I was functional within several weeks. Then, I was able to do enough research to realize that though all my tests had been negative/normal to that point, they had not been anywhere near extensive enough, and that's why I eventually went to Cornell-Weill. (Small fiber dysfunction cannot be detected through standard nerve conduction studies or EMG, as these are only gross enough to measure wide-scale dysfunction of larger, myelinated nerves.) Before those weeks, though--imagine a sunburn all over your body that's been rubbed with steel wool. And that included the face and scalp.

I would strongly suggest you look at the www.lizajane.org spreadsheets--a number of us worked with Liza Jane in helping to put together this long but extremely useful way to monitor just about every test for neural dysfunction we could think of/find out about--to see just how thorough your testing has been; if you're like most, I bet you've just been through the tip of the iceberg.

Also, in the Useful Websites section, there are numerous good articles about neuropathy types and testing. The Triehaft article gives a very good overview of small-fiber neuropathy in particular:

http://www.thecni.org/reviews/13-2-p07-treihaft.htm

And, since you mention face/lips--one fo the most common culprits for those type of symptoms is neuropathy due to celiac/gluten sensitivity or vitamin deficiencies from that--make sure you get tested for those levels.

why do you say thyroid? I'm curious because that is what *I* think!! Other tests are coming up negative..

Reading quickly over Rose's site..

Ihave a question:

I take a B12 supplement... and my B12 was fine in blood tests..

so, I should ask for this additional test? Please advise soon,I am seeing PCP on Tuesday.. Thanks!!!

And if i didn't say wecome i sorry, today is goffey Sunday and the one's
you need the most will be back tomomorow. Please if it at all posi. be
here as well it's something you said about your mouth. But Sue has
had to rest all day and must be back at Dr. who will yell tommomrow. When
she stops yelling let me see what i can find out. Don't worry you Dr. will
first day senting up tests. See you on Monday Sue

Hi.

The b-12 supplement you are taking, (believe me on this), is not Methyl B-12 which is what we all take. We take megadoses (and in my case, it worked terrifically).

Now the numbers (that the experts say is normal), IS NOT NORMAL FOR PEOPLE WITH PN.

People with PN should have their numbers in the 4 digit range. Believe it or not, this is true.

I go to iherb.com and I buy the 5000 mcg of the Methylcobalimin.

The regular b-12 in the bottles is cyanocobalimin (which your body takes in, then converts it to methyl (which is what we need), only we don't get enough.

So what exactly is your b-12 level?

Melody

it's 566, Mel.. and my folate was 16.3

Thanks..

So... this is way low for a PN sufferer?

I hope Rose chimes in, but her site is informative enough.
If you take B-12 as a part of a B complex or multi-vit- it is CYANOcobalamin.
METHYLcobalamin is the oral sub-lingual type.
If you are taking a B-12 supplement alone, your B-12 test results will be skewed. Read Rose's suggestions on what to do prior to blood work tests.
My levels were (at first) in the 450 range and deemed 'normal' by my idiot PCP at the time.
After taking methyl- the labs flagged me, and my present PCP had to make notation that I take supplement for B12.
My range now is in the 1200-1400 levels.
Be wary of any doc that says 'normal' (even 'abnormal') - get the results and know your numbers. Then compare them and use the Liza Jane charts
to track differences over time, and succeeding testing.
Bob B