I'm in that no-man's-land of undiagnosed symptoms. The neurologist says my case is suggestive of MS but not yet conclusive.
It seemed to start with numbness that spread from my armpit and into my be precast. I went to my family doctor who ordered mammogram and ultrasound. Within a couple of days it had spread across my back and chest. A day or two more and it spread into my face. I headed to the ER. I was terrified it might be a stroke or something else urgent. All the ER tests came back negative. The mammogram and ultrasound came back negative. And the numbness remained. In all, it lasted about 6 weeks.
My doctor followed up with an MRI of my neck. It showed some demyelination (was it along the spinal cord or nerves in there?) and a follow up MRI of the brain was recommended. She referred me to a neurologist. I was concerned with how quickly I got in to see him - it was the next week.
More bloodwork which was all negative for infection and autoimmune issues. The brain MRI showed 2 lesions on my brain. He has requested a full spine MRI, a lumbar puncture and additional bloodwork. He also referred me to an MS Clinic. From what I understand, the results from these tests may not lead to a conclusive diagnosis.
So I am now in limbo. Afraid to "admit" I may have MS. Facial tingling remains and I've have neck and shoulder pain for a couple of weeks. My low back goes into spasm when I get up from my seat on the commuter train. I feel like I've had an aggressive session at the gym. I'm not one to take pain medication but things have changed - sometimes I just need some relief.
I feel as though I am in limbo. I dare not talk about it at work - what if there is discrimination? I don't know what I'm up against IF it is MS. I don't want to worry my family, my friends ... I don't want to try to "convince" those closest to me that my symptoms hurt. I'm afraid to admit it.
I think back over the last couple of years ... The bruises from walking into furniture (just preoccupied). Ripping burning pain on the outer thigh that would wrench me from sleep ("IT band"). The vertigo spells. Trouble swallowing like I am about to cry (anxiety? Stress?). Back pain that did not respond to medication. Perhaps these were not just symptoms of stress or preoccupation ... Or perhaps they are. I must wait now for the calls for the next MRI and the lumbar puncture and the MS Clinic and hope I get some definitive answers.
Do I hope it's MS? Not really. I just want to know what this is so I can move forward with finding relief and finding my voice.