Neuropathy and other strange symptoms

Hi. I am not a doctor so I hesitate to say much and am just so glad you are going to Mayo soon. You are lucky! The stmptoms sound so similar to those of Adhesive Arachnoiditis. I was diagnosed by a recognized researcher and authority, who has since retired. Thank God Mayo will be seeing you. I am trying to get appt now. I think it is progressing rapidly now Understand it can take long for appt. All the very best. Do look up Arachnoiditis and websites of Dr Forest Tennant. Joan Mahon

Hi Jola,

I'm also going to Mayo next week. I've got the tingling in my hands every day when I wake up and it's very very intense. I've got burning through out my body and the pain in my legs wakes me during the night. Also have brain fog and short term memory issues. I do have fibromyalgia but I also have a severe iron buildup in my brain so I'm trying to get things sorted out. I'm in Wisconsin so I'm seeing my neurologist at mayo in eau Claire and hope to be sent on to Rochester.

Good luck at your appointment! Hang in there! Laura

Good luck to you to Jola

@jola65 I have experienced an electric shock down my entire body and for me this was caused by spinal cord compression due to a collapsed disc in my neck and bone spurs that grew there and all of it was pressing on my spinal cord. It caused pain all over my body. I was at the stage where if I bent my neck, I got the electric shock, but I didn't have it all the time. It happened when movement of the spine put more pressure on the spinal cord. I did have pain all the time all over my body and numbness, tingling and some stabbing pains. I also had vertigo and neck muscle spasms were rotating and tilting my vertebrae independently and putting more pressure on my spinal cord that already had no fluid space left around it. Prior to my spine surgery, I was working with a physical therapist and when she realigned my neck vertebra, it stopped the vertigo until another spasm started it up again. Your symptoms seem to fit this scenario, and I would expect your doctors to get imaging of your spine to look for a similar problem. Cervical spinal stenosis can also affect bladder and bowel function and cause permanent disabilities if the spinal cord is damaged. If you do have cervical stenosis, a fall or neck injury with that condition can put you at risk for paralysis. I had spine surgery at Mayo a couple years ago that fixed all those symptoms. I did have some muscle loss in my arms and shoulders because of it, but I have been rebuilding some of it since my recovery and doing well. I hope you'll check back in after your Mayo visit and share your experience. You'll be in good hands there.

Here are some links about this, and a link with my Mayo patient story.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111492/
This is Dr. Bartelson, the neurologist who saw me a patient at Mayo, talking about cervical spinal stenosis
https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/videos/cervical-spinal-stenosis/VID-20433375
https://www.mayoclinic.org/diseases-conditions/spinal-stenosis/symptoms-causes/syc-20352961
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

Hi Jennifer I’m glad that you feeling better. I’m prying that Mayo doctors will find what is wrong with me so I can get some relief
I will look in to the links and video.
Thank you Jola

Hello @jola65,

Many Connect members have talked about similar electric shock type pain, although mainly in their scalp. However, I think it may be a discussion worth checking out; you can read through some of those posts and jump in where you feel comfortable here, https://connect.mayoclinic.org/discussion/electric-shock-type-pain-in-my-scalp/.

I’m also tagging @ftlamont @sooz50 @danibec31 @chipp123 to see if they might have more insights to share.

Hi, @jola65 - glad you connected with @jenniferhunter and @butterflylan17 about the burning and tingling in your arms and legs and the feeling of an electric shock running through your body at all times. @johnbishop @artscaping also may have some thoughts for you as you look for some answers.

@butterflylan17 - have you found anything that alleviates the hand tingling when you wake up or the burning throughout your body, even for a little while?

Hello @jola65, I have small fiber peripheral neuropathy with only the numbness. I can't imagine how bad it would feel to have an electric shock running through the body at all times. I'm sorry that I'm not able to offer any suggestions. I did find something that seems like it might be close to what you are experiencing.

Lhermitte's Sign: The Current Status
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4445188/

@jola65
Hi there,
What part of the body did your symptoms begin.
Mine started on the bottom of my feet and gradually progressed to above my waist.
Jake

@jola65, @lisalucier, @johnbishop, Electric shocks were an early phenomenon in my history with small fiber neuropathy. They seemed to start about 5 or 6 am when I was asleep. My memory is that they were set off when my head turned a certain way. The shocks or zappers continued until I got my head in alignment with the rest of my body. I started adding alignment...visualizing a string going down your nose and all the way to between your big toes.

Eventually, the zappers yielded to the more frightening "burn". My abdomen and upper leg areas become inflamed. It feels like there is a fire burning right underneath my skin. It appears that the fibers send a confusing signal back to the brain which results in burning pain. I still have the "burn" consistently but it is at its worst in the morning. I generally just lie quietly until the burning sort of burns itself out. The secret I think is to welcome and even greet the "burn". So I say, "good morning Mr. B. What are you up to today?" The purpose is to refuse to be defensive or try to stop the pain. Learn from it...
don't fight it.

The brain fog and memory issues may be anxiety.....you can have that verified by neurobiological testing from a clinical psychologist. With a diagnosis, you can look at medications that will be helpful. My physician recommended Cymbalta. I began a 3-month treatment plan with a 20 mg dosage, then a 40 mg and now 60 mg every morning. Even learning that my foggy brain issues were not a disease helped set me on the right path.

And finally, the tingling.....which I describe as capable of becoming needlelike. That needle pain in the arms, wrists, and hands can be intense. I have tried the OTC Biofreeze, the Copaiba essential oil and a roll on CBD topical. They all work to some degree for some amount of time. My go to which is always with me is a 3:1 (CBD/THC) medical cannabis topical by P and B which immediately relieves most of the tinging and pain and then hangs in there for several hours. I use medical cannabis vapes to get help quickly and tinctures during the day and at bedtime.

I hope this answers some of your symptom concerns. It took me several years to get to this point but I now feel that I am in control instead of the pain/tingling/zappers. So be free of suffering and know that knowledge gives you power. You will be very impressed with the medical community at Mayo.
Chris