Year Long Progression of Neurological Symptoms. Exhausted. Angry.

Posted by sherwood06 @sherwood06, Jan 13, 2022

These last few years have been nothing short of exhausting. I am 42, and for the past 1-2 years I have been running from Dr's offices, lab tests, imaging, etc... If a symptom is neurological, good chance I have had it. It's almost a joke. The most consistent symptoms are burning/sweating feet, right-legged weakness, tinnitus, involuntary finger flexion, and overall muscle twitching. My cognition is now greatly impacted as I have brain fog, memory issues, and dampened processing ability. The symptoms tend to come and go. On average, I would say I have 3-5 days of "relief" followed by two weeks of heightened symptoms. There is no catalyst (at the conscious level). I've kept a detailed diary trying to isolate a trigger...diet..sleep..mood..etc... When my sleep is affected, its hypnogogic hallucinations, hypnic jerks, sleep apnea, tinnitus. Daytime symptoms include limb and finger tremors, random shooting pains, headaches. I've heightened my meditation practice, trying to practice greater acceptance and compassion for my situation, but it doesn't seem to matter. I will be hit with new symptoms that seem like cause for concern. Any one of these symptoms could warrant a trip to the ER. (I have stopped taking that route.) In my search for answers, I have had blood work, MRI's, nerve conduction, sleep studies, eeg's, small fiber biopsy, neck surgery (possible stenosis), etc...Nightmare. All the major players have been ruled out. I was recently diagnosed with FND (MGH BOSTON), which at some level makes sense, but it also leaves a lot of uncertainty. Currently, as I type this, I have significant brain fog and my quads are burning (anything my pant is touching) and twitching. Last night I woke up with hissing in my ears (felt like someone had turned up the volume sensitivity) and my head did some random twitching upon waking.
Anything neurological is fair game it seems. As I said, it feels like a bad joke. I'm curious if anyone else has had such a rotating cast of symptoms, with no pattern to presentation, and no resolute cause. I have had trauma in my life, but even PTSD doesn't present in this fashion. I wish I could say I wasn't in good hands, but I am seen at MGH in Boston. If anyone has any advice or suggestions, I would love to hear them. I am open to thoughts on psychosomatic, spiritual, causes as well... Thanks

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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!

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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.

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@dbluttenb

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.

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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.

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