My intro and history, labs inc. Opinions needed.
 

This is my first post, it will be a long one. Please bear with me.
I'm a 34 year old female, overall healthy and active.

In my teens I started having occasional days where my inner forearm would be numb in the morning and last a day or so, like I slept funny and pinched a nerve.

1999-surgery for TMJ, successfully relieved most of the headaches and jaw locking issues.
2002-2006- pharmacy school, high stress, too many sleepless nights and too much partying
2007-start experiencing pain in wrists, hands, arms (right moreso) seemed to correlate with increased computer use and getting a smartphone. wore splints, didn't really help.

2010-first pregnancy, developed a numb patch on inner right foot that somewhat resolved as the years have gone by, sensations still abnormal. After a difficult L&D, had a numb patch on inner right knee, also has somewhat resolved. Breastfeeding, pumping (TMI but from the holding, squeezing of the breasts to get milk out), babywearing increased symptoms. When wearing my daughter (in a wrap carrier on my back or front) my right forearm and hand would tingle/hurt/go numb.

2012-EMG/NCV showed mild carpal and cubital tunnel issues, not nearly as severe as my symptoms according to surgeon. Had right CT release and ulnar nerve transpostion. Seemed to help at first, but as I returned to regular computer and phone use, it came right back. Pregnancy #2.

2013- you know what hit the proverbial fan. son was born in April, hand/arm symptoms very flared up from holding and breastfeeding. August- started noticing lower body symptoms in my feet, sometimes up the back of my legs- tingling, buzzing (2 days of literally feeling like I had a cell phone vibrating under my foot), and some whole body vibrating sensations. Saw a neuro asap suspecting MS. MRI of brain and entire spine was clear. Massage and chiro to no avail. Symptoms wax and wane, some days I hardly notice lower body symptoms. The upper body has worsened, and I suspect Thoracic outlet syndrome. I have trigger points in my scalenes that can induce the nerve pain down my arm. Pain radiates through pecs, around scapular area, and down arm into hands. Fingertips are all fairly numb. Typing/writing is very painful and almost impossible for anything other than a very short time. I assumed compression issues, until the lower body feelings started after which I began to investigate systemic issues.
I also have an increase in eye floaters over this last year. Recently had dilated eye exam that was normal. In January, I had a month long period of skin itching at night, scalp and torso and arms mostly. I had about a 7 day period of skin hypersensitivity on upper back, neck, chest and arms. I currently am about a week into another period of night itching, this time with night sweats.
I bruise easily, and it seems to be even worse lately. Possibly from supplements?

May 2014 - miscarriage at 8 weeks

I've had extensive bloodwork, and just visited the Miller Center for PN in Chicago and saw Dr. Rezania. He said brachial plexopathy (which didn't explain lower body issues) and ordered EMG/NCV. Which was perfectly normal. So this must be small fiber? I am suspecting an autoimmune process since it flared postpartum and with stress, although elevated ANA is the only marker to be elevated, and the docs all say that doesn't mean anything if it's elevated.

Here are labs-
March 2014
wbc 3.73 (l)
rbc 4.84
hgb 15.3
hct 44.7
mcv 92.3
mch 31.5 (h)
mchc 34.2 (h)
plt 213
ne% 42.1 (l)
ly% 45.8 (h)
(there are a few more on the cbc but all wnl)

Iron w %sat
UIBC 318 (H)
iron binding 269
%sat 14 (L)
iron 51
ferritin 17 (low end of normal)
B12 490
Vit D 30.7 (this was while on 2000 iu daily supplementation)

Comprehensive Met Panel
Albumin 5 (H)
alk phos 85
sgpt 12 (L)
sgot 17
BUN 11
calcium 9.8
chloride 105
t protein 7.5
creatinine 0.9
glucose 92
potassium 4
sodium 142
bilirubin-T 0.5
co2 27
AIC 5.1

lipids all good

Sed rate -9
CRP <0.5
Free t4 1.2
TSH 1.7
TPO 29.1

Serum protein electrophoresis- normal

tissue transglutaminase ab igG igA - normal

ANA - positive, 1:160 nucleolar pattern
SSA 10
SSB 6
RNP 15

Lyme - ELISA- negative

June 2014
SSA/SSB - 1/1
Anti-DNA doublestranded AB <10
ANA 320
pattern - homogeneous cytoplasmic antibodies present
CRP <3

Prot electrophoresis again normal

Current meds/supplements
Ferrous sulfate 325 mg tid (often only 1-2 times daily)
Omega 3 1250 mg daily
Vitamin E 400 iu daily
Vit K2 daily - forgot bottle, not sure of dose or why I'm taking it
Primal Defense probiotic daily
Prenatal vitamin daily
D3 2000iu 1 or 2 daily
benfotiamine 300mg twice daily (started about a week ago, no difference noted yet)
Coq10 100 mg -3-4 daily
aspirin 81 mg daily
NatualCalm magnesium 1 tsp daily

Maca powder, bee pollen and royal jelly (fertility supplements)

Whew, ok thoughts?

How do you edit a post?
I wanted to add a few things.

I was previously taking a B complex, ran out about a month ago, haven't noticed a difference.

I have atrophy noticeable to me, but nobody else apparently, in my right chest, arm and hand, particularly in the inner forearm near the elbow where my cubital tunnel surgery was.

My nose, top of feet and toes have decreased temperature sensation.

I have hairline sweating on the right side when I eat. It used to be only with sweets, now it's with anything.

I get muscle twitches, sometimes it will feel like an internal vibration, other times I can see the muscle twitching.

Have had periods of frequent flushing on my chest, face, neck and upper arms.
Get chilled and goosebumps when it's not hot.

My diet has a lot of good nutrient rich foods, but it also has a lot of sugar and alcohol as well. I know this area needs improvement and I'm thinking of adopting an autoimmune paleo diet as a trial.

A few other things

-was on a b complex, ran out a month or so ago, couldn't tell a difference.
-eat too much sugar and drink too much alcohol (10 ish drinks a week probably)
-decreased temp sensation on nose, top of feet and toes
-have had episodes of sore mouth, where all food burns it as though they were spicy
-atrophy in right pec, arm and hand (especially along inner forearm down from where ulnar nerve surgery was)
-muscle twitches- some tiny, some make the muscle jump
-right sided hairline sweating when eating-used to be only with sour foods, now it's happening more with all foods.

Things "fall asleep" easily. My toes from the comforter, my heels from sleeping with my knees bent in the air, my legs from driving. HNPP genetic test is pending.

Last thing I think. I have been breastfeeding for 4 years and 2 months, including during a pregnancy, although after the first year there's not a whole lot of milk production.

Welcome to NeuroTalk... newbies cannot edit until they pass out of the temporary moderation status. It won't be long now.

I have a few comments:
1) I'd get the MTHFR DNA testing to see if you have a methylation problem. Pregnancies would put a huge stress on this system because folic acid is not active in people with this polymorphism. (the Deplin you were on is methylfolate) So taking folic acid is like nothing! Estimates today are that 10-30% of people in the US have this problem. It can range from 35% defect to 100%. Meaning some mild forms squeak by with fewer symptoms.
Your MCV is borderline high and your MCH is high which indicates a macrocytic anemia which comes from low B12. Taking both methylcobalamin and methylfolate may help you more. They are both OTC and easy to find these days and not expensive.

2) pregnancy also uses up Omega-3s in the mother, as the fetus takes alot of EPA and DHA to form its nervous system. So some flax oil and fish oil may help. Taking a good magnesium supplement also helps these get metabolized properly. DHA repairs nerve and other cell membranes.

I'd wonder about vaccines you have had ... vaccines can trigger autoimmune disease in people with a genetic tendency for this.
If you work in health care today, you have had some vaccines, most likely. I have a vaccine injury thread I just bumped up today on the Sub Forum here. GSK continuing over a few years to make contaminated vaccine products! (even after being warned by the FDA).

http://neurotalk.psychcentral.com/thread163906.html

There are so many things now in our environment, that can cause nerve damage, and this makes diagnosis very difficult.

Thank you so much MrsD, I was certainly hoping for a reply from you ;)

I have had all the recommended vaccines, including annual flu vaccines.

Somehow stress triggered this, at least triggered the severity. I was researching TOS and started noticing the tingly feet. That sent me spiraling into an internet fueled panic that I was dying of ALS, had MS, etc. The more I read and stressed, the worse my symptoms got. That had me thinking maybe it's just "all in my head" but I can say with confidence now that while stress makes it worse, it is very real.

I think my rheum ran the MTHFR, and said it was normal but I haven't been back to get print outs to verify.

So you suggest a methylfolate and methyl b12?
Do you have dietary suggestions? I'm thinking of autoimmune paleo, which is no grains, seeds, nuts, nightshades, sugar.

I get a lot of good fat (coconut oil, EVOO, avocado, fatty fish once or twice a week).

My head is swimming from all the info on candida, toxins, lyme disease in spite of negative tests (I have had tick bites), histamine intolerance, autoimmune disease with negative bloodwork, etc.

I would push the Omega-3's... too much fish can lead to heavy metal issues....so get a good supplement that is a bit safer.

Flax oil is important too.

The vaccines are a problem. We've had people here with reactions to rabies vaccine, the adult whooping cough and H1N1 and other flu vaccines.

Even if your MTHFR comes out okay, I'd do the methylated B12 and folate as insurance since you have had 2 children recently. It takes a while to rebuild after having babies!

You might consider some heavy metal testing.
Also that then leaves LYME. We have a member here who had a relatively new test which he claims is the best:

The links to the new test are in post #2:
http://neurotalk.psychcentral.com/thread195046.html

If you get cold sores, and/or have had chicken pox...I'd try some l-lysine to see if you are having some Herpes action going on in the dorsal roots along the spine. These viruses activate under stress and illness and cause much grief. One gram a day to start and raise to 2 grams after a week. See what happens.

Welcome windypetunia. :Tip-Hat:

Let us know how the HNPP genetic test comes out. Thank you.

Thanks Kitt, will do. I suspected HNPP based on symptoms, but doesn't it typically result in EMG/NCV abnormalities? I have 2 little ones so I'm really hoping it's not something I've potentially passed on.

While I would agree--
 

--that the lab results do suggest an ongoing B12 deficiency (and there may be other low B vitamin levels as well), I do think that the autoimmune possibility should be checked out further.

Certainly, B12 deficiency and autoimmune problems often go hand-in-hand ("pernicious anemia" caused by lack of intrinsic factor, leading to lesser B12 absorption, typically results from autoimmune processes), and the chances of having more than one autoimmune process going on are fairly high. You should have the ANA result further checked with more specific tests for type and pattern (if you haven't already) and I would also get a celiac panel (anti-glidain IgG, anti-gliadin IgA, anti-tranglutaminase IgA, total IgA--deamidated forms if you can) and thyroid function panels (TSH, free T3, free T4, antibodies done (if you haven't already).

I've had all the further testing run under the ANA, and all comes up negative, so my docs are telling me the elevated ANA is "false positive." I understand this can happen, a certain number of people have it elevated, yada yada. BUT, in light of my symptoms,and the fact that it was 1:160 a few months ago and 1:320 last week, I'm concerned.

It is not uncommon to have elevated ANA after a pregnancy.
This is the body's reaction to the fetus. Some women get this and it typically resolves with time after delivery. (even my own doctor had this situation).

The ANA can fluctuate in people between elevations and then followed by periods of normal. Doctors know this and typically retest after several months pass.

So far your testing results suggest a macrocytic anemia. I'd follow that path for now, to treat that.

Pregnancy and long term breastfeeding can be stressful on some women, as the nutrients the baby needs are taken from the mother. Human milk, is high in fats, cholesterol and glutamine for the baby's early development of the nervous system and GI tract. There are some prenatal vitamins out there especially for pregnant and breast feeding women.
This is one:
http://www.amazon.com/Expecta-Lipil-.../dp/B001F0RA34

DHA is a long chain fatty acid used to build the cell walls of neurons in the brain and spinal cord.

Some RX prenatals also have DHA in them, but not all.

Thank you so much for all your insight. What omega 3 supplement do you recommend? I do have some ground flax that hubby uses in smoothies, and a bottle of flax oil that we use occasionally.

Vaccines-I'm so mixed on this. I know why we need them, and I vax my kids and myself (to protect my kids), but they do terrify me and I think I'll skip as many as possible in the future.

Do you have a methylated b12 and folate you personally like?

Lyme-it's my understanding that the ELISA, which I've had, is the worst test, with the western blot better and whatever Igenex uses the best. I'm thinking of seeing what I need to do to have it run through them. Anyone know?

Heavy metal testing-will my doc look at me like I have 2 heads if I ask this or is it a normal blood test?

Viruses-I don't get cold sores, but have had chicken pox as a child and shingles in my 20s.
.

What dose on the methyl b12 and folate? I wish we were taught this stuff in school!

If you had shingles already.... that suggests your immune system is low...or your dietary arginine content too high. Arginine is an amino acid that signals viruses to activate and replicate. It will trigger Herpes out of dormancy.

Heavy metals include mercury. (along with cadmium, arsenic which is common in the environment, and chromium, and manganese which is an additive in gasoline).
It is a standard test for people with nerve damage symptoms. There are blood tests, urine screens, and hair analysis.

Expecta is made from algae grown in vats and is vegetarian.

Most quality fish oils are purified, and good companies include Carlson's and Nordic.

A standard fish oil has EPA and DHA in it.
This is my EFA thread:
http://neurotalk.psychcentral.com/thread6092.html
My son has ADHD and responded very well to DHA supplements, well enough to discontinue his ADHD medications. Low levels of EFAs in children have been found to lead to ADHD.

The link I gave you above has the NEW lab as of 2012...for you to research that. It is not Igenex. (for the Lyme testing.)

Methylcobalamin is very common now. I've used Jarrow's back when it was one of the only sources. Then Puritan's came out with theirs, and I tested that out (had blood levels drawn with it) and now we are using the Costco brand.

I have just seen methylcobalamin at Sam's Club! Any of those would be adequate and are very inexpensive too.

Methylfolate used to be common then Merck decided to withhold it from OTC sales for several years so RX versions could make more $$. It has returned OTC now, and Solgar was one company that contracted with Merck for OTC sale again. You can buy it at some quality health food stores, at iherb.com
and Amazon.com
http://www.amazon.com/Folate-800-Met...lgar+metafolin

800mcg should be enough for most people.
I think you should start at 5mg of methylcobalamin daily on an empty stomach (no food for 1 hr after)and get retested in 3-6 months. Stop the B12 at least 5 days before testing. If you are over 1000, on that retest you can drop down to 1mg daily if you desire, but you don't have to.

Here is a good site concerning HNPP. It can help with many of your questions. Explore the whole site. It is an interesting site.

http://www.hnpp.org/

One point is that CMT has an extra copy of PMP22 and HNPP has a deletion (loss of copy) of PMP22 on the same chromosome where CMT has a duplication.

http://www.hnpp.org/genetics.htm

MrsD, I just ordered the methylb12 and folate from amazon. How soon would you think I would see a decrease in symptoms if they are going to work? I am thinking I should wait on major dietary changes, so I'm not confounding the issue with new supplements and diet overhaul all at once.

I don't know what your background is but your knowledge and willingness to help strangers is amazing. Thank you.

I have sent you a PM....;)