widespread numbness throughout body 24/7. Any ideas?

I'd love to hear thoughts about possible options/diagnoses and tests I should consider to guide my neurologist, who has been baffled by my symptoms and does not have any answers for me. I tried two neurologists already and am still undergoing testing.

2.5 Months ago, I developed facial numbness that then turned into widespread full body numbness on both sides. It's 24/7 with no change at all, aside from spreading more overtime. No other symptoms. The neurologist had no idea what this could be and is still running a few tests. Here are the tests i've done so far.

MRI brain (normal)
CBC, ANA, ESR, Complete metabolic panel, Lyme blood test, B12, (all normal)
MRI, spine (scheduled)
Sweat test for small fiber neuropathy (have to wait till jan due to long waits)

Any ideas of what I should ask for/what other issues to consider?

Does lyme disease present with bilateral numbness but no other symptoms?

You need a punch biopsy to test for Small Fiber Neuropathy. It can cause widespread numbness but usually there’s some pain that goes along with it.

Even if it is SFN, you come back to the question of what’s causing it. Could be an infection or autoimmune usually. Get tested for celiacs as well, often triggers these things. Mold can also do it

I had this exactly but my numbness started in my toe then spread. I was checked for MS and transverse myelitis which can cause the full numbness.

After about 3 months I improved about 70% - I attribute it to taking b12 and wahls protocol diet.

Were you taking b12 when tested? It can skew results and look high. I think a true level is off b12 for 6 months.

I also get numbness from chemical exposures (new furniture, mattresses, carpets).

As Walkingbyfaith said, mold can cause it too.

These days when I feel my feet or hands getting funny I take sublingual b12 and it goes away.

Jane974 said...
I'd love to hear thoughts about possible options/diagnoses and tests I should consider to guide my neurologist, who has been baffled by my symptoms and does not have any answers for me. I tried two neurologists already and am still undergoing testing.

2.5 Months ago, I developed facial numbness that then turned into widespread full body numbness on both sides. It's 24/7 with no change at all, aside from spreading more overtime. No other symptoms. The neurologist had no idea what this could be and is still running a few tests. Here are the tests i've done so far.

MRI brain (normal)
CBC, ANA, ESR, Complete metabolic panel, Lyme blood test, B12, (all normal)
MRI, spine (scheduled)
Sweat test for small fiber neuropathy (have to wait till jan due to long waits)

Any ideas of what I should ask for/what other issues to consider?

Does lyme disease present with bilateral numbness but no other symptoms?

this is exactly how I started out as a child. Now I'm 28. I started with facial numbness around 7 yrs old bt had 1st tick bite at age 4. I distinctly remember the numbness was like in my cheekbones if that makes sense. My legs would just give out and I'd suddenly collapse in elementary school and idk if it was the weakness or numbness. It was terrifying that my parents didn't beleive me and ppl probably didn't think to check for lyme back then. Fast forward all these years the numbness came along with anxiety panic attacks even though I knew I wasn't feeling any anxiety or nervous. Anxiety meds never worked. Also I would space out maybe seizures and numbness and tried to talk bt it came out jumbled. Some of my mouth and eye lids looked slouched downward known as bells palsy which my parent and nobody noticed smh. I had one positive lyme test via urine in 2015. I've had several lyme bands come BK positive on western blot bt not enough to be "positive" . Probably an antibiotic preferably doxycycline it's like an antibiotic challenge. U just pop one or two then u go and get a lyme western blot done and u will quickly see that you will have more bands positive and also different numbers and bands positive than the last time which is really cool. Sometimes biofilms build up and put a shield or cyst around all the bacteria so when we take a test it doesn't show it will come BK negative and that absolutely does not rule out not having lyme or something else. This is exactly wt happened to me over the years. Also numbness is a big indicator of mold toxicity . Can be mold that u don't see just from breathing it in it builds up and multiplies. Then I tried TUDCA for the mold to remove it works wonders.