Year Long Progression of Neurological Symptoms. Exhausted. Angry.

I have intermittent neuro symptoms since I broke my neck, but post COvid has been debilitating- neuropathy, brain fog, no balance, etc. Do you think you had Covid? It has worsened symptoms in folks like me with preexisting conditions.
The anxiety and depression are normal- they’re on the cusp finally of figuring out our issues because of concussion research, but it’ll take a long time.
Hang in there- docs are in the dark about much of this, adding to our angst!

You should go look at the symptoms for superficial siderosis caused by internal brain bleed. It can be continuous, or caused by a trauma in your past, up to 30 or 40 years ago. It is very rare with no cure. It is found in a MRI of your brain, but they have to know what they are looking for to find it.

Thanks. I searched for causes for 4-5 years, got tired of being told I had BPBV, or whatever they call it, because they couldn’t pinpoint anything else. Did have MRI.
It wears you down, as well as your self-esteem. Mayo was the first place I went for help 10 years ago- they didn’t even know what I was there for, as my doc’s letter mentioned I had neuropathy as well as dizziness and balance issues.
The good news is they decided to look at my heart as there’s a family history. Found a large ascending aortic aneurysm which my cardiologist keeps close track of! Another MRI looking at the brain found sphenoid sinus disease, which eventually spread near the brain, and I was operated on last year for that- I’m sure I would have been in trouble eventually as there are no symptoms until it’s advanced. Had a wonderful doc- it’s a bit complicated up there, and Dr. Lanza is the guy if anyone needs sinus surgery, especially sphenoid.
Keep looking as long as you can find new avenues relating to your symptoms.

I have also had very similar symptoms over the past three years (I just turned 43 last month) but the one thing that comes up are autoimmune antibodies that don’t match up with my presenting symptoms. I’m consistently ANA and mpo-ANCA positive with a revolving door of other sometimes positive antibodies and a prior history of mild Graves’ disease (autoimmune hyperthyroidism). The other autoimmune antibodies are sometimes positive in a flare up but go away and I also don’t have declarative symptoms associated with any of the autoimmune antibodies coming up. However, I have only recently gotten neurologists to pay attention (my weakness hadn’t been showing up in the doctor’s office, often numbness was just blunted feeling, MRI, and nerve conduction tests were normal). After getting negative results from the small fiber biopsy, the most recent neurologist mentioned a possibility that my muscles might’ve been compensating for hyper mobile joints, causing nerves to be intermittently but increasingly entrapped over time and leading to greater fatigue and strain. For this reason I’m going to see a neurophysical therapist who specializes in this and see what it can do. However, no one is particularly caring about the hypnogogia in my case. In addition I work with a high trauma population so every doctor I saw wanted me to “cut down stress” by not working. Now the cognitive issues have led me to step back since March with continued symptom progression. I have also had the added complication that I am a woman who could be perimenopausal which is apparently something medicine knows nothing about and oscillates between blaming everything on and dismissing as completely irrelevant… so yeah.

In any case, I wanted to share that the physiotherapy and physical therapy can sometimes shed light on process issues (like compensation for injuries or hyper mobility etc) that don’t require you to be physically inactive or not fit.

As a side note, there are many spiritual traditions where seeing geometric patterns are considered sacred geometry. It’s commonly seen during ayahuasca ceremonies and similar vision inducing rituals with and without psychedelics. So you might consider looking into sacred geometry to see if there are spiritual interpretations that resonate with your experience.

Best wishes for healing and growth,

Balance issues and Neuropathy and I have just sent all my paperwork to mayo Praying they help me .
I had covid for 23 days in 2022 Brain fog fatigue handwriting list goes on.havent worked in a year because of Balance and fatigue 😩
Only 59 always so on the go with everyone now it's horrible can't drive 😒. What did mayo did for you

Please check for SS. Dr. Kumar and Dr. Marsh at Mayo Minnesota.

@sherwood06 just reading a few of your comments, by any chance are your symptoms mainly on one side of your body?
I’m in Australia and had C6/7 fusion 2 years ago, since surgery pain and neurological symptoms have worsened, I suffer with a lot of the symptoms you mention mostly on the right side of my body, head to toe.
I have tried everything physio, pain management courses, ketamine infusions, nerve blocks, a spinal tap to check for ms, multiple MRI and brain scans and even trial of a dual spinal cord stimulator, nothing helps.
I’m currently stuck on pain medication, which is creating more issues due to the side effects
I have been diagnosed with right sided ipsilateral complex regional pain syndrome.
Have you looked into this?

Read the book - The body keeps the score. Take your time through it - make notes

Also find your closest brain injury support group

I was so validated by both. It’s not imaginary-this is real. I also researched specific places that handles my symptoms. I took their evaluations to my PcP - who actually took most of it to heart and I have been getting pretty decent care. The worse is getting rubbed on the arm and told to go see my psychiatrist. This isn’t in my head! Then they pysch. Telling me I am borderline because I get angry- frustrated-irritated when they don’t listen.

First, you are not alone. I have most of what you described, starting 36 years ago with muscle pain and diagnosed with fibromyalgia. As time went on I started getting tinnitus, an a host of other symptoms as you described. I also have gut issues to add to the mess.
I, too have a great team of doctors (Barnes Jewish, St. Louis) who are baffled at what could be at the core of this condition.

I use meditation, diet (triggers), creativity, music ( playing and listening to) to help cope with the symptoms. I , also, write- just mind-dumping, writing whatever comes to mind. I try to stay active, forcing myself to work out, do yoga, sometimes play pickle ball.

It helps to have good friends or family who check in with you or can sit to listen what you’re experiencing. I do not have that luxury, so I talk with a counselor. It makes a difference.

I hope this helps at least somewhat.

I find this with today's medical approach- I'm 85 I'm use to The Dr being in charge- running his practice- not some Assembly line Corp! or nurse practitioners! Not that I'm not by any means taking away the marvelous service & medical contribution
They bring to the medical field- I also know one size doesn't fit all! I have two grandstanders who are in the nursing field with advanced degrees! I hate being distracted minus if you will when I tell you how MY BODY WORKS! When symptoms started from what illnesses - look me right in the face - tell me I don't have a clue of what I'm talking about! They have their rehearsed memorize - always includes the endless jabs & scripts! I don't use pharma unless its absolutely necessary! Wishing you the best of luck in your journey! Yes the good old standard
psych diagnosis always comes in very handy when you don't lock step! Hold your ground
God Bless