Total body numbness and tender lymph nodes in neck

Posted by cb2287 @cb2287, Jun 5, 2019

I have had numbness all over my body including lips and tongue for the last three years which have gotten progressively worse. No apparent weakening of muscle strength or sensitivity to temperature. There were times of apparent abatement when staying in dry climate in southwest but that period of abatement disappeared this year. Twice performed MRIs of head and neck, CT scan, EMG, Skin punch test, bone marrow biopsy and bloodwork. Ruled out : Small fiber neuropathy, MS, lupus, ALS, stroke, Thyroid problems, diabetes(glucose and A1C tested), B12 or 6 deficiency, sarcoidoisis, Hepatitis, HIV, Shiga, salmonella, shingella, cardiac issues. The only issue found mild macrocytosis. I am at my wits end to find a cause for my progressively worsening symptoms. Any suggestions where I can turn to next to try to find answers?

Interested in more discussions like this? Go to the Neuropathy Support Group.

John, Volunteer Mentor | @johnbishop | Jun 5, 2019

Hello @cb2287, welcome to Connect. I'm sure it must be difficult when you can't find any answers for what's going on with your health. I'm glad you found Connect and I'm hoping you will find some answers. One interesting item that I've read about macrocytosis is that it isn't a specific disease but indicates an underlying problem.

Macrocytosis: What causes it?
-- https://www.mayoclinic.org/macrocytosis/expert-answers/faq-20058234

The Significance of Unexplained Macrocytosis
-- http://www.bloodjournal.org/content/112/11/3449?sso-checked=true

Have you thought about seeking a second opinion? If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The
contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63

jager5210 | @jager5210 | Jun 5, 2019

I am not a doctor but have been on the same quest for a bit longer. Google root canal risks if you've had any root canals. Also, vaccines or any other mercury or aluminum contamination. This is where I'm at.