Ongoing chronic numbness, tingling, and pain. Starting from scapula, down left arm. for my spouse (28AFAB)
There’s a long story to this. I’m not sure where to go because we have been dealing with this since May 2024 and noone has given us any diagnosis and it’s getting worse week by week.
They have been suffering from a variety of abnormal symptoms since 5/5/24 and have not been able to get a clear diagnosis or relief. After mowing the lawn that day they felt sore/aching on the left upper side of their back. At no point during that activity did they feel like they injured themself. They continued doing activities like rock climbing, gym workouts, and resting when needed. On 5/20, that sore area started to feel more painful, tingly, and numb and started going down their left arm. Between 5/28 and today (2/14), they’ve been seen by their PCP, GPs, sports med, a neurologist, a vasuclar surgeon, and the ER bc the numbness, pain, and tingling on their scapula was not resolving and getting more intense and even migrated down their arm, hand, and left side of their face.
Eventually, they even felt numbness in their left leg, pubic/saddle area, and feet. Starting 11/24, they began having TMJ issues (especially on the left side) and pain in their left leg/groin. No signs of weakness until Jan 2025 in their left arm. Their HR has been acting up and causing some chest pain this month and the blood flow in their legs/feet seems to be getting worse. Sometimes they felt some numbness on right side but mostly left. They’ve tried, icyhot patches, ibuprofen/tylenol, rest, PT, chiropractic, flexeril, and gabapentin to manage pain. They got an EMG of their left arm/hand, xrays (cervical and thoracic), MRI (cervical, thoracic, shoulder, and scapula, brain all without contrast, then a full spine eith contrast), MRV and MRA (brain), CT (brain), bloodwork, ultrasound (shoulder), and EKG. They have lost a significant amount of muscle and body weight (worried of atrophy). Since 11/2024, they have not been able to be very active without aggravating symptoms in their shoulder or leg. Symptoms also seem to get worse with anxiety/stress or applying pressure on affected areas. Their quality of life is severely impacted, they cannot get or keep a job, and they are concerned that these issues are only getting worse and more numerous. They suspect peripheral neuropathy, TOS, some dysautonomia (POTS?), MS, or some underlying issue that docs haven’t been able to find.
The neurologist seen on 1/31 ruled out MS, tried to rule out TOS because the EKG was negative, but we have seen some research and anecdotes that some people who have TOS have negative EKGs. The latest MRI with contrast of their spine from an ER visit (2/13) was negative and ruled out a cancer, lumps, or tumors. No stroke, no trauma, no MS. The vasuclar surgeon we saw today (2/14) did a Wright’s test and a Ruse(?) test for TOS, and tested negative.
They had a CBCT scan of their jaw and a dentist diagnosed them with degeneration in their left joint / cartilage (2/6). Not sure if related or something different.
The biggest things to takeaway are that they have had a lot do tests come back as negative, they have ongoing numbness everyday and pain most days, usually all on the left side of the body originating from the scapula shoulder area. There has been little to no signs of weakness.
Any ideas or questions are very appreciated. I don’t want to rule everything out just yet, still not believing that its not MS.