Interesting thread.

Ellsac, wishing you the answers you seek.

You have come to the right place for help and support. There are many here that are so helpful and have much insight.

Best wishes to you in your quest for answers.

Thanks, everyone.

Glen-glad to hear you had a good experience with Dr. Chin.

I have done a lot of research, and have printed out the list of possible causes to show Dr. Chin, and have printouts of all my labs so we can mark things off as we go along. I hope he doesn't think I am pushy, but I am used to being in control of my health. I almost died about 5 years ago, when I finally got diagnosed with autoimmune Addison's Disease. It was a struggle to find a doctor who recognized my symptoms, though, because it is fairly rare, and even now, I have a good endocrinologist, but the day to day care is all in my hands. I can't shake the feeling that there is an autoimmune aspect to all of this.

Also, the high vitamin B6. The two doctors I spike to seem to write this off, but it is on every list of possible causes for neuropathy that I have seen. It may not be the whole picture, but I feel it could be part of it.

For the ladies in the thread-do any of you notice a correlation between when your hormones shift and an increase in symptoms? I notice mine are worse during a few days before my period, when my period is ending, when I ovulate. Seems whenever that stuff happens, I get an increase in issues.

I think the most disconcerting thing about all of this, is the feeling that it is spreading. I now get pin prick sensations in my tongue, throat, and sometimes eyes.

I also seemed to develop dermagraphia during all of this (no itching, just bright red lines when skin is rubbed and scratched-also no swelling).

It is all so confusing. Well, until the 23rd I will continue to try and remain level headed, and not be too afraid of the future. My hope is that the horror stories I read are far and few between (loss of ability to walk-more severe autonomic involvement). I don't know where this leaves my husband and I as far as having a baby-if it turns into something autoimmune, I don't know how I feel about possibly passing anything on to my child-I also fear pregnancy making me worse, and not being to care for a child properly. Sigh...

Hey Ellsac,
I have not been officially diagnosed with SFN but have had some tests which suggest its presence or at least some type of problems with small fiber nerves. So you asked about if others have more problems around their periods. I thought I would reply because I actually was just looking into that recently after having a lot of searing pain in combination with numbness (it was very odd) down my right leg during my first day of my period. It got bad enough that I had to leave work but seemed to dissipate after I rested/slept for a while and then hasnt been that bad since (that was a few months ago). Is this at all similar to what you experienced?

I am always worse just befor my period and ovulation, it is well documented that women have more issues with pain at this time I think it's to do with the increased estrogen levels 😔😩

Hi ladies

Boiler..I don't have that specific symptom, but I definitely have worse ones. For instance, I was dealing with numb parts of my calf, muscle and tendon tightness around my knees, and an increase in pin prick sensations all over (I will get these in my throat and tongue also). My period has now been over for a few days, and my legs feel totally normal again, when for a few days there, I was getting freaked out that they would feel awful forever (I am working on curbing my catastrophic thinking hah).

The increase in pain makes sense, due to hormone fluctuationss

I would like to say that dermographia is a sign of angioedema.
Both forms of skin wheals are discussed in this paper.
http://www.aacijournal.com/content/5/1/10
The histamine type is far more common, than the bradykinin type, so often doctors don't think of the latter at all.

There is acquired angioedema (and I am not speaking of hives), but of another biogenic amine involved in angioedema caused by another biogenic amine called bradykinin.

Some people get acquired angioedema from the ACE family of blood pressure drugs. There are several types of inherited angioedema, (called HAE), and one is involved with female hormones.

When I was taking lisinipril for blood pressure, I developed over time a huge reaction involving the nerves, and GI tract, breathing and swelling of various body parts for no reason.

My doctor finally decided I had HAE and always had it. The drug only exacerbated the symptoms and made them more severe.

These links explain it better than I can. Most doctors don't know about this unless they have taken continuing education courses about it. It was only elucidated in the 1970's, and hence is not in most course work in medical schools.

http://www.haea.org/patients/what-is-hae/
This link is the most comprehensive.

http://www.webmd.com/allergies/angioedema-hereditary

The word angioedema is also used to describe hives and other issues involving histamine. The angioedema I am writing about is mediated by bradykinin...which also causes swelling and things like dermographia. Any stimulus or pain can cause fluid to leak out into the skin and in people with HAE, the enzyme C-1 inhibitor is low and cannot metabolize excess away...so spells occur. In females...estrogen is implicated. One treatment is to use androgens to suppress this.

I had a simple IV (injecting a contrast agent) for an echocardiogram 2 yrs ago ..it was placed in the back of my hand. It lasted all of 1/2 hr and was removed. That resulted in my left hand swelling up for over 2 months! That is only one example.

Doctors may think HAE patients are hypochondriacs, so it might never be diagnosed properly. And doctors may not even understand HAE. When the swelling happens, there is numbness, and or prickling or itching as well. My severe final reaction involved whole body agony for 2 days! For years my symptoms were explained as "asthma" and GI problems.

Wow that's interesting, Mrs. d! I don't get any swelling or even wheals, just bright red lines when scratched...and also an exaggerated flushing response at times...possibly developing some kind of rosacea. These things are definitely worse during these times of the month that I speak of.

Heat is my worst issue. Just now cooking, our kitchen got really hot, and my whole head flushed terribly, I have some sort of weird scalp headaches. NONE of this is internal...by blood pressure and internal temp are never affected, I have monitored both. It all seems t be superficial. Still uncomfortable, though!

I am going to read those links.

Hey! I know what it is like to be deathly scared of unexplainable nerve pain. Long story short to spare you hours HAVE HOPE, I was 18, yes 18 when I began showing sensory and very slightly motor neuropathy and entrapment. Tingling in all limbs, fasciculations, tremors...etc. Every test you can name---negative.

Freaked out for months about why and how and what, all my symptoms came on within 3 days and guess what I am 24.5 years old now and it hasn't changed. In a good way. I've learned to live with it and honestly I don't think twice about it, really ever. I forget about it most times. I worried about MS and all that jazz but my symptoms never progressed. What I'm saying here is I remember crying in bed hopeless and clueless and I worked my way around it because mentally I made very convincing symptoms exactly what they sounded. Like all things in life sometimes you have to live and let live. I'm not telling you to do a 180° and change your attitude because that is not how the human brain works, but I can promise you a lot more people make it out of this than you'd ever think. You're young, simply JUST KNOW to hang on and If symptoms don't worsen you will naturally build confidence just like you've naturally responded with fear.

Trust me my drs were dumbfounded and I'm more active and happier than ever. You are in my prayers you will do this!!!!!

Welcome mrobin44.