--most of the serological tests in that Latov/Quest listing should be done if you are suspected to have neuropathy that is not obviously from diabetes/impaired glucose tolerance, compression, toxic exposure, or other more "obvious" causes.

And, you are close enough to Latov's group to see him or other members of his group, in all likelihood--the Cornell-Weill Center for Peripheral Neuroapthy at Columbia/Cornell Medical center is where Latov practices, along with a number of other excellent clinician/researchers. Cornell/Weill is one of the world's leading centers of neuropathy research and testing.

Thanks everyone for all your advice!

I went to my neurologist again yesterday. My anti-sulfatide antibody count was 1700. Normal is 1500 and below, so he seemed to think it wasn't something to be super concerned about, since my symptoms are sporadic and I'm "barely positive." I feel like he thinks a lot of my symptoms are anxiety related, which is possible I guess, considering I'm an anxious person, even without the PN thrown in the mix. Anyway, he ordered the test again to see what it shows this time, and I should probably have those results in a week or so. I also asked him to run some of the other B Vitamin tests, as well as magnesium, and Vitamin D, since it wasn't done last time. He actually said he doesn't suspect it's small fiber neuropathy, because my symptoms don't sound like that, and the anti-sulfatide test isn't a marker for small fiber, but for auto-immune sensory neuropathy.

I DID ask him what my B12 level was though, and he said it was 679. He considered this to be "good." The test apparently goes all the way down to 200 for the low normal range, which surprised me because that seemed really, really low. I'm waiting to find out what the Vitamin D level is before I start supplementing with that, but I did want to get your opinions on the B12 though. Is 679 too low, or should I be taking supplements? If so, how much of the methyl B12 should I be taking? I know there's no upper limit, but just wondering. Thanks again for your replies!

Deanna

You could start with 1000mcg of methyl form daily.

From that you would get 13mcg or so absorbed. That is enough to help out, but not raise you too much.

People with symptoms, may respond to B12 anyway, and since it is not dangerous, or toxic and is very inexpensive now, I'd give it go. With the new low normal at 400, you are just above that.

Deanna

what did your neuro say about a possible IVIG trial for you?

I know you stated that he had hinted at it before

I personally have been helped with it and I feel if a physician suggests it as a potential tx it is worth a trial run

of course, it is cost prohibitive and our wonderful insurance run health care system will usually fight tooth and nail to deny, but it is worth a trial imo if your physician will try to get it "approved" by the insurance gatekeepers

Hello All,

My name is Michael and I am here on behalf of my mother, who is 58 years old.
Yesterday she complained of a 1 minute episode of left side body numbness. She said she was generally weak but could still walk and even move her arm. About a week ago she experienced something where she felt dizzy and was walking to the left which lasted about 5 minutes or so.

I took her to the ER right after it happened (yesterday) and she got all the normal tests to search for TIA or stroke. The MRI came back that she had a minor stroke sometime in the past (probably before her heart surgery in 2010) but no recent signs. After the CT, MRI, spine, neck, and heart echo, nothing seemed to be the cause and the neurologist could not give a diagnosis.

She is not a smoker, does not play sports, no drugs or exposure to chemicals, and just lives a normal life with a normal desk job.

The doctor also said that he has seen hundreds of patients who have had that happen to them and does not have a diagnosis. Has this happened to anyone else and does anyone have any ideas or information that I can pass along? I would appreciate any help.

Thank you for your time,

Mike

mike you need to start a new thread so that more people will see your post and possibly help you. go to the main peripheral neuropathy page that lists the different threads and on the left side near the top is a box that says new thread. click it and post this again.-

She takes no statins? After a heart surgery? No blood pressure medications?

To start a new thread you go to the main page here
http://neurotalk.psychcentral.com/forum20.html

And there will be a large button, NEW THREAD. Just click that.

I'd have your mother get her B12 tested. Low B12 is very common in older people. It is now recommended that all people over 50 take a B12 supplement. (methylcobalamin is best).

Here is a video to illustrate how complex and common this is, with doctors ignoring it:
http://www.youtube.com/watch?v=BvEiz...ature=youtu.be

And here is my B12 thread explaining it all:
http://neurotalk.psychcentral.com/thread85103.html

Please watch the whole video...it is very sobering.
And not only will doctors ignore it, if they DO test for it, they
rely on outdated lab ranges and may tell the patient they are NORMAL when in fact they are LOW (below the new low of 400pg/ml). So it is up to YOU to get your numbers and treat yourself if you are truly at 400pg/ml or below! (the video does not go into that detail)

I did ask him about that, but he didn't seem to think it would be 1) approved by insurance or 2) beneficial. He said since my symptoms aren't really typical or severe, and since he's not even convinced this is what I have, he didn't recommend it. He also didn't think it would be effective. I think he believes my symptoms are stress-related, which honestly, I could believe. But I'd like to know for sure.

I haven't gotten the repeat blood test back on the anti-sulfatide yet, but I did do another B12 test again, just to see what the level was this time. It was 478. Down from almost 700 a few weeks ago. So he suggested supplementing with B12. Still waiting on Vitamin D levels though! Hopefully I'll know something this week.

Since my levels of B12 are just barely normal now, I'm wondering how much I should take. Should I go for the 1000mcg or the 5000 mcg? Is it weird for B12 to fluctuate so much within a few weeks? Thanks all!

Deanna

If you do 5000mcg a day on an empty stomach you should raise quite a bit in 3 months. Then you can decide to do 5000 mcg twice a week or so.

You may have been living on stored B12 in the liver. But really there is not alot of research on details about fast decline causes.