Hello all,

to spare you the long and gory details. I'm a formerly very healthy/active 40 year old man with no health problems at all, ate very well, etc;

February 2014: abrupt onset of widespread paresthesias. 10 days later heavy/thick feeling in R arm and L arm. mild weakness in both hands.

April 2014: increased weakness in both shoulders, and tremor in both arms; frequent but not constant fasciculations; sore, aching specific muscles - forearms and quadriceps, and sides of necks.

July 2014: increased pain in fingers/hands/shoulders/lower back - swollen, throbbing, aching - intemrittent

August 2014: urinary hesitancy

September 2014: increasing painful neuropathy, paresthesias, now in abdomen, chest wall, umbilicus, and more.

Every imaging study (MRI brain, cervical and LS spine with/without contrast) and electrodiagnostic study (NCS x 2, EMG x 2, SSEP) are negative. 10 pages of labs from Mayo clinic only found borderline fasting glucose 102 with normal A1C; borderline low copper 0.69 with normal ceruloplasmin; and urine ketones with no glucose or proteins. They could not make a diagnosis. My clinical exam is normal in the opinion of neurologists despite the fact that my shoulder strength is objectively reduced by 40% (last year I military pressed 135 pounds at the gym; this year it is 75 pounds).

None of the symptoms have gotten better. Everything gets worse, but not slowly - rather, every month or two I'll develop a completely new symptom seemingly overnight, with no warning whatsoever. Things never get better; I just keep getting more and more symptoms.

We have considered treating an unknown potential rheumatologic disorder with anti-TNF (ie, rituximab, etc) since my musculoskeletal symptoms are consistent with though not diagnostic for spondyloarthropathy (ie, psoriatic arthritis - I had a questionable psoriatic patch on my elbow at one point). however, that doesn't seem to explain the neurologic symptoms which are progressive, and frightening.

I've thought about treating myself like a diabetic, just based on the borderline glucose and possibility of small fiber neuropathy (the one thing I haven't been tested for) along with presence of urinary ketones, but I don't have protein or glucose in my urine suggesting I definitely don't have glucose intolerance/prediabetes, certainly not enough to cause this degree of rapid onset neuropathy.

Any bright ideas? Specifically, how can I have widespread neurologic symptoms with completely normal electrodiagnostic studies?

Do you know your B12 level? Mayo uses the old lab ranges that go down to 200--- as normal. And the new low is now 400pg/ml. Low B12 will initially present with neurological symptoms, and anemia will follow much later.

Low copper is not common. You could take a copper supplement
to see if that helps. Low copper results in anemia too.

I would not expect you to have glucose in the urine. This only happens at high blood levels that are consistent, (your fasting is 100 and A1C fairly normal. )

I'd look to your diet. Eliminate gluten from your diet for several months, and see if that helps.

Look to your past, and see if you took a drug that affects the nerves. Fluoroquinolone antibiotics, statins for cholesterol, drugs for urinary tract infections.

Look at your lifestyle too... are you exposed to solvents/chemicals in your work,or hobbies?

Sore muscles and twitching often responds to magnesium. Blood testing for this is not very accurate unless you are ultra low or ultra high. The middle range is murky and does not show what is really needed by your body. So using a quality magnesium chelate orally (not oxide form), or eating foods that provide magnesium, or using a topical lotion like Morton Epsom Lotion daily, may help the muscle issues. Morton's is at WalMart and online at Amazon. It is really helpful for muscle tension, twitiching, pain, and improves circulation. It is very inexpensive but extremely useful.

We have a magnesium thread here:
http://neurotalk.psychcentral.com/thread1138.html

Did Mayo test you for the DNA methylation errors? MTHFR?
If not you may have this and cannot methylate (activate) folic acid and B12 properly. This then leads to deficiency even though testing shows the vitamins are there (in their inactive forms). Methylcobalamin B12 and Methylfolate (MetaFolin) are both OTC and will correct this problem.

Welcome snowyday.

Hi, and thank you.

Yes, B12 was below 400 (350) but methylmalonic acid very low, not consistent with B12 deficiency.

Copper intriguing, can't find out much about low copper without low ceruloplasmin, but I have considered supplementing 1 mg daily and may do that. Low copper also causes pancytopenia, and I have had mild anemia, borderline low WBC (3.5k - normal 3.5k-10.5k), and low-normal platelets (160k, normal 150k-450k) for some time.

I am awaiting TTG (gluten antigen) testing results.

I have not had/do not have any chemical/drug exposures, I never took meds and have an office job.

I have really wondered about heritable tendency to pressure palsy since my nerves seem exquisitely sensitive to pressure. Example: yesterday I had my blood drawn, had a wrap around my elbow for about 2 hours to cover the gauze. Today my left forearm still feels shooting, tingling numb/painful feelings as if the wrap is still there, too tight. This is almost 24 hours later.

The problem with this diagnosis or any other is the normal EMG and NCV. How can that be? How can I have widespread neuropathic disorder with normal electrodiagnostics?

Will have to read more about magnesium, and DNA methylation errors, thank you.

Here is an interesting site telling about pressure palsies.

http://www.hnpp.org/

Sounds like you do need to correct some nutritional insufficiencies. Like Mrs. D stated, low copper and B12 are implicated in neurological problems and blood disorders. I would look at your iron and zinc levels as well as Vitamin D.

Key nutrients for proper blood production are B12, Folate, B6, copper, iron and zinc. They are also needed to keep your nervous system functioning.

Hello all,

2016 update.

Continued progression of neuropathic pain to include dysesthesias, lancinating pain in my fingers and feet.

New developments in late 2015 include puffy, red, mottled palms when below my heart, which drain to white above my heart.

New developments in 2016 include sternal chest pain, dyspnea (pain with deep breathing).

Abnormal labs/studies: in 2014 a skin biopsy confirmed small fiber neuropathy. This disproved one of Mayo's hypotheses that this is purely a central sensitization syndrome.

Rheumatology is working up a neurovascultis, possible nerve biopsy to do.

The objective finding of mottled, discolored palms are new, and worrisome. I also have subjective but not objective flushing in the face and neck.

Has anyone ever heard of a superior vena cava syndrome beginning with erythema of the palms without edema? The presence of chest pain, dyspnea, facial flushing and palmar erythema are raising the possibility of a superior vena cava syndrome, which would classically be caused by a mediastinal mass. Of course, given the history of mysterious neurologic symptoms and progressive joint distrubances, one possibility would be a thymoma, which is associated with myasthenia gravis not to mention high rates of a variety of paraneoplastic neuropathic syndromes; and rheumatologic diseases of all stripes. I have done a plain PA film of the chest (negative) but thymomas are often seen only on lateral view, or on high res CT of the chest, which of course I would avoid if possible given radiation exposure.

So if anyone with any experience with thymomas would care to chime in... feel free.

Hi, I was reading thru your thread and when I came to Neurovascultis, I thought of vascular issues and the role that grape seed extract plays into this issue.

I'm headed into my 21st year with this OPC (grape seed extract) and a friend with 15 yrs of neuropathy is now into 5 yrs with it and off all meds she had been taking for years...her issue is due mostly to statin drugs. She is very improved.

https://nccih.nih.gov/health/grapeseed/ataglance.htm

I'm forever thinking of the value of OPC's and our health.

Do research for yourself. Do you take any meds now?

You can even google vascular issues and mayo or city of hope or univ of maryland. These institutions do a lot of work with OPC's....