Newly Dx
 

I was just dionogest with SFSN. I'm waiting for my test results to come back to see if there is a fixable cause or if it's idiopathic. However, my consern is that because it has present itself so early (i'm 28) I will eventually loose feeling in my feet/hands.

Welcome.

It would be helpful to know a little more about you and how you came about this diagnosis. First, tell us about the onset...was it over time, or sudden. Also, what test determined you have SFN and what test results are you waiting to find the cause? What symptoms are you having (all)?

I wouldn't worry about losing feeling just yet. Many can control symptoms for years. It really all depends on what is causing it as for whether you'll even have progression.

My PN started when I was around 30 yrs old. That was 36 yrs ago.

Fixing the hypothyroidism, stopped it for quite a while and I had functioning return. Then I became insulin resistant, and it started up some again. But I control it with diet and some supplements and have very little to complain about today.

The hereditary neuropathies will progress, some faster than others and that may be due to environmental triggers. There is one paper on PubMed describing a person with no symptoms of CMT until they were given Levaquin, which is neurotoxic in some some people.

I have been having episodes of "sensations" on my feet/hands. Saw a nurologist and druing the inital exam he noticed the lack of feeling I had as you move away from my body.

I had a few blood test done today (ALT, TSH, Lymes, B12) and next week I go back to have a GGT done. I got a call later today that my B12 is on the low side of normal so I will have some peptide test done also.

The hard part with me is that i'm adopted and dont' know my family history.

You will want to get the numbers for that B12 test.

In US units 400 is the new lowest normal. If you are below that,
you need to supplement ASAP.

Lab ranges in US are still reporting the old range, which includes very low numbers as "normal".

Hi I was dx at 28 too. Though for myself the why behind this even with basically every test in the book is still unknown if you can find the why behind this then it can help to treat.
I am not adopted but my father and his side we dont know anything about so I understand that frustration around health too.
I hope you get some answers and relief

Looks like you're just getting started on a diagnosis. There are likely many tests ahead for you to help put the pieces together. At least he's started with some of the basics (B12, GGT, and others). Like MrsD said, you need the number.

Sure it's great to have family history, but the focus is on you anyway so don't let this stress you. I'm adopted and the only difference it made was that the doctors looked at 'everything' instead of just what family members would have had history of.

Keep us posted.

So far I have the AST and B12 results back.

AST is 23 U/L
B12 is 163 pg/mL

He is doing some more tests with the B12 when I go in for the GTT.

That B12 is very very low. In fact it can lead to permanent damage!

I'd suggest you start 5mg of activated methylcobalamin orally on an empty stomach ASAP. Injections will take too long to bring you up, unless you have aggressive dosing with them (like once a day for a week, then once a week thereafter).

How did you get so low? Do you use acid blocking drugs? Do you have low stomach acid or relatives with pernicious anemia?
Something is going on with you metabolically to be so low!
I can't imagine a doctor doing MORE confirming tests on a low result like this!

Here is something to read, and perhaps give to your doctor. It is written for doctors in fact:
http://www.aafp.org/afp/2003/0301/p979.html

This article explains that oral B12 can work as well as injections, and we've seen on this forum that many people are given injections of synthetic B12 (cyanocobalamin) not often enough, or they cannot activate it properly to methyl form, and they do not do well. Most therapeutic outdated manuals doctors consult still say injections once a month. This is just old advice.

Here is the B12 thread:
http://neurotalk.psychcentral.com/thread85103.html

Your GTT should be at least 4 hrs long...to show lows (reactive hypoglycemia) which can be problematic as well as highs (showing diabetes or tendencies)

I suppose doing a parietal cell test for autoimmune damage to the stomach cells that make intrinsic factor will show if you have autoimmune damage or a genetic failure.
http://www.nlm.nih.gov/medlineplus/e...cle/003351.htm