I am 40 years old and I have had nerve pain for years now.
I've had health anxiety for longer.
In 2019, it started with some tingling down my left leg and with pain in my left foot, a tiny spot on my heel where my sural nerve was. I could tap it and send a zap, but when walking it was excruciating. After a few months it dulled, and became a numb patch. Then, that stopped, as nerve pain down the left outside of that same foot became great. Then the top of my foot. Then the top of my big toe. It all stems from my ankle, which swells due to venous insufficiency (had doppler due to swelling and varicose veins). The pain can get intense, especially when touching my ankle (a massage, or putting on socks, can lead to sharp pains), but it's also numb to the touch.
Back in 2015, I saw one neurologist after intense heat intolerance for years, trouble swallowing, and dizziness. My MRI showed white matter lesions, and he said it's likely MS but to come back when I experience any nerve pain/numbness/weakness.
He retired.
When the nerve pain in my left foot started, I saw another neurologist who ordered another MRI and said the white matter lesions were not MS, likely migraine, and lumbar MRI looked fine. He said I 'graduated" from his practice.
My GP didn't like that, so she sent me to a specialist an hour away.
They performed a nerve conduction and ultrasound of my nerves. While my sural nerve showed as enlarged on my left foot compared to my right, it was nothing outside the boundaries of "normal."
I had blood tests run by a rheumatologist, because my ESR and CRP were slightly high (35 and 1.5, respectively). No ANA markers, no monoclonal proteins, no rheumatoid issues, no Lyme, (sometimes) active EBV (though I had it back in 2001), nothing showed up as concerning.
My high inflammation was put down to being overweight with PCOS/IBS.
This left foot pain has continued for about 3 years, but doctors gave me gabapentin and are unconcerned.
More recently, after a stomach flu in March, I've had a bit of nerve pain/numbness in my right foot. I also have what I can only assume to be meralgia paresthetica in my right thigh, primarily hitting at night (I wake up on my back and it's intense burning and numbness). During the day, I have nerve pain with light touch (pants) and some numbness, but nothing touches the burning at night.
My left torso falls asleep at night, and stays without 100% sensation through the day.
I also have loss of sensation in my left hand, with nerve pain/numbness in my left shoulder.
I sometimes get random tingling/zaps, through my body. I put those up to anxiety because they do go away on their own.
I had CBC/CMP done recently, which was fine. And just to add, mammo/pap are fine, too.
My neurologist ordered a full spine MRI - all was fine. I have not had a skin punch biopsy; my neurologist does not think that would be worthwhile.
She's thinking this has to do with posture and/or circumstance. Venous insufficiency, inflammatory markers, swelling, working a desk job.
This all makes sense, so I started physical therapy. They don't really know how to deal with nerve problems so they continue to have me stretch my back (which is ok, but my issues are not stemming from my spine).
Does this all sound plausible? It feels like I've run the gamut of testing except for the rarities. Could it really be multiple compressions, or inflammation without diagnosis, or should I see if more testing is available? For the longest time I was convinced I had MS so I have severe health anxiety; hearing from 2 recent neurologists that isn't the case should have eased my mind, but with all these symptoms it's difficult for me to believe them.
Throughout this ordeal, I've thought I had lymphoma, myeloma, amyloidosis, MS, brain tumor, stroke, ovarian cancer, colorectal cancer, leukemia, Lyme, Sjogren's, fibromyalgia, chronic fatigue syndrome, pancreatic cancer, blood clots, leprosy, etc. Imagine walking into a doctor's office in 2020 in New York and saying "please test me for leprosy." It didn't go well lol
I'm currently in therapy, and it is helpful, so I should know better than to seek reassurance here... but I also don't really know where else to go, because all of these issues feel so big to me. I need to learn to sit with feeling uncomfortable, with nerve pains and numbness and zaps, etc, just like any other normal person would do after testing cleared them. I need to learn how to feel at ease with a lack of diagnosis. But with this progressing, I am worried there's more going on. Because of course I am. Sigh.
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Originally Posted by gailveronica
