What should I do? Feeling lost…

Do you think your job carrying mail could have affected your neck? Excessive alcohol can cause neuro damage and also B12 deficiency. But it seems that alcohol abuse is well in your past. Does the neurologist know about your traumatic brain injuries? Do you think they might be relevant? Was your neck involved in the TBI's?

I have had "paresthesias" since 2001, similar to what you describe, and a cause has not been found. I had a positive Lyme test at the time. I gave up dairy and gluten. My neuro is not aggressive. I have diagnosed spinal and neck issues. But unless I want surgery, my neuro avoids ordering imaging. At one point I had an MRI and also EMG testing. If you can find a way to pay, an MRI of your neck and/or brain would be useful I would think, as well as an EMG.

A physical therapist has been most helpful for me, especially one who is good at manual therapy (massage). I find that the PT is better at diagnosing and explaining, than the doctors. I also found an orthopedic doc who is not a surgeon, who was helpful. Pain management might help you too.

It's interesting that for a long time your symptoms would come and go. Your primary care doc could run some tests for autoimmune issues. Your neuro could consider MS-? You could get a Lyme test.

I do tai chi which helps a lot, not sure why. I have not found real answers in 23 years but hope you do!

Hello @szud, I would like to add my welcome to Connect along with @windyshores and others. Many of us with symptoms similar to yours have had that same feeling of being lost. It can definitely be a struggle trying to figure out what is going on and find a treatment that helps. Have you thought about seeking help at a teaching hospital or major health facility like Mayo Clinic that uses a multidisciplinary team approach to reaching a diagnosis and treatment?

Well the symptoms started just before I was a letter carrier, that job was a huge physical stress for me though despite being in very good shape. My doctor knows everything i thought to be relevant so everything i included here plus more. My concern was the sudden onset of the symptoms and now it seems to be progressing rapidly. My biggest fear is losing my motor skills and not being able to care for myself or work. I did possibly have neck injury but also i had a bad experience with a chiropractor manipulating my neck(never again lol) after my last concussion.

If it is just tingling and pain I could deal with it as ive had various chronic pains hat have came and thankfully went over the years. Right now the uncertainty and prospects of what could be happening have got the best of me. Maybe i read too much on google. He did reorder the neck mri today but like with your doctor im not sure how useful chasing the unknown will be especially if symptoms stabilize for me.

No I hadn’t but how would one start down that route? With the post concussion syndrome i exhausted every avenue to get relief from chronic headaches and happened upon a sports medicine clinic but mere chance from the advice of a random nurse that i was on the phone with. At the time even neurologists i saw either didn’t know about therapy or thought little of it.

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.

You might also want to find a teaching hospital in your area if you are in the U.S. - https://www.healthguideusa.org/teaching_hospitals.htm

You wrote problems:
1. Pre-alcohol: beer cans/bottles just a few years ago
2. Cigs: used that, stopped 35 years ago
3. Brain-injury: 2022 from my bicycle accident
4, Nerves on legs/feet: I’m found 8n a couple weeks that another doc showed where it is - we will see
5: Little or nosleeping: No
6. Meds: oh, a lot 9n my BI
7. Young age: not me - I’m 68 years
8. Pain: I hVE pain on the back of my legs (falling down on my gurage)
9. B-12s: I use it to
10, Pot/marijua (sp?): tried that but can’t within my TBI meds

It is hard to eliminate all the possible causes on your own. It is not fruitful, and it is stressful going down the internet rabbit hole and wondering whether you have every ailment that pops up. "My concern was the sudden onset of the symptoms and now it seems to be progressing rapidly. My biggest fear is losing my motor skills and not being able to care for myself or work." - this should be enough to make any doctor concerned! It is important that your care team understands this impact on your quality of life so that they keep digging and scheduling diagnostics for you. They should methodically rule out things in your medical history (such as your head injury) and continue to run other tests to rule out the most common causes of neuropathy (such as diabetes and alcohol) and circle in to the less common or more intrusive to diagnose.

Your is different than mine in that it goes in waves. Mine is never gone, but certainly fluctuates in severity with no apparent cause. So far, my best course of action has been to be persistent, proactive, and honest with my doctors. I ask them about the test results, I ask them about next steps, I call schedulers instead of waiting for them to call me. If I have read about something online, I respectfully ask them about it.

It took a few months of being consistently in the care of my neurologist before he ran out of diagnostics. That consisted of a brain MRI, a neck, then thoracic spine MRI. Blood and urine tests. Then we got into the more intrusive, including a lumbar puncture to look at my cerebral spinal fluid, then skin biopsies, followed by a fat pad biopsy. Obviously, not all of these may be appropriate for your symptoms, but my point is that there are more than one or two tests for a neurologist to run. I recommend sticking with your care team as much as you can before trying to strike out on your own. I understand a lack of benefits may hinder what you have access to, but use it as much as you can.