undiagnosed, doctors call me a puzzle. Does anyone have any clues?
I am a 25 year old female recently got married a year ago. Everything started in late january 2025 with a herniated disc in my lumbar spine. The MRI also showed i have spinal stenosis and spondylilothesis. My orthepedict at the time prescribed me gabapentin and i was on that for about 2 months with no improvment. My pain started radiating to not just my legs and feet but my upper back and arms so she referred me to see a rhuematologist and changed my medicine to lyrica. The rhuematologist did all the autoimmune blood tests and everything came back negative. At this point my pain is spread throughout my entire body with burning, pins and needles, numbness and i developed raynauds in my toes. In May of this year i expirenced a weird "episode" that landed me in the ER. My face was numb, smile lopsided, my entire right side went paralyzed, slurred speech, muscle twitches. They did a CT scan of my brain ruled out a stroke and sent me home. I got very lucky and got in to see one of the top neurologists in my area he did extensive blood work, ordered a Full spine MRI and nerve conduction study and EMG. the blood came back pretty much all normal. MRI came back normal other than the herniated disc. NCS was normal. But the EMG came back abnormal which surprised my neurologist he called my mom in the room as he was doing it because he did not suspect this. I had widespread dennervayion without reinnervation and CRD and myotonic discharges. At this point i knew it wasnt all in my head a test finally came back abnormal. But he said its so nonspecific he cant diagnose me. He ordered a CT of my chest abdomen and pelvis which was normal, mammogram normal, i did a PETscan normal, i had a colonoscopy and endoscopy done and the only thing they found was a precancerous polyp in my colon. He did blood work for paraneoplastic syndromes and those were negative. About 2 months ago i started developing all these ulcers all over my body i saw 3 dermatologists and they had no idea what it was did a scrape skin biopsy and came back as an infection so i decided to go get another opinion and this dermatologist did a skin punch biopsy and it came back as prurigo nodularis. My symptoms continue getting worse my knees and feet are stiff i can barley walk im in pain from head to toe, involuntary muscle spasms, blurry vision, my whole body burns, migraines and my newest weirdest symptom that started this week is my entire throat and lymph nodes swell up and feels like something is stuck in my throat i have a hard time breathing, swallowing, talking and i keep choking/gagging. He got me off lyrica and i am currenlty on dulexotine which started to help and now im back to pain i take ativan to help me sleep. I just got a lumbar puncture yesterday waiting on those results and i got accepted to mayo clinic Arizona i go next month. I have lost an insane amount of weight january i was at 140 and i am currently at 97lbs. If anyone has any ideas, advice, suggestions or if you have similar symptoms i would love to hear from you. I had to drop out of collge im on medical leave from work and i no longer can drive. Its been miserable these last 8 months but im not giving up until i can get a diagnosis and treatment!
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@bprather
Good evening!! I really look forward to hearing how your evaluation goes at the Arizona clinic next month. Do you have an appointment with an orthopedic surgeon or a neurosurgeon?
That is where I had my spine fusion surgery last December.
Prayers that you will be guided to do what is best for you back.
Sherry
Your story is heart wrenching to say the least. You’re so young to be in such pain. I wish I could offer some magic advice that would help you. Keep searching. There has to be an answer out there. For now I will offer up a prayer.
no i do not my neurologist is thinking it’s more neuro related possibly neuromuscular disorder. i was supposed to get epidural injections for my herniated disc but with my new skin condition they decided not to go that route.