Im new to this site and wanted to get some opinions on my story. I’m 42 year old male who was very active cyclist up until this hit me,
4 months ago I started having intermittent electric shock like pain and tingling in my left leg. It was worse after Cycling. It quickly progressed to both legs. I’ve had 5 previous back surgeries so assumed it was related to that. Spine surgeon checked me out, MRI, CT etc but found nothing. He referred me to neurology who did an MRI of full spine and brain. They found multiple T2 lesions on my brain but only in one area- periventricular. I was admitted to hospital that day for a week to have numerous other tests including lumbar puncture and evoked potentials. All tests came back negative including the olligoclonal bands.
My symptoms have progressed to nerve pain and tingling in arms, hands, chest face and eyes. I also have a,it of muscle twitching. My physical exam was considered normal sort from brisk reflexes. I haven’t got any weaknesses etc and can walk normally.
i have also had all other autoimmune diseases ruled out through various bloood tests,
I’ve seen 3 MS specialists who have all said the same- very unlikely to be MS as I don’t fit the criteria. However, my sensory symptoms continue to worsen so I’m very frustrated as what this could be. The Drs have said to repeat MRI at 6 and 12 months to check for changes but all 3 don’t think have MS.
Is there anyone else out there with a similar story or experiences?
I don't know if you have MS or not, but i do know that there isn't any easy way to diagnose it. It took all my doctors a year to confirm it.
but I want to tell you this. I first herniated disks in my back in 2001 and have suffered from severe pain in my back and legs since. I was diagnosed with MS in 2011 and it causes numbness in my legs and arms amongst other issues. At the end of last year after having an MRI of my brain and entire spine, my MS doctor referred me to a neuro surgeon who said he could help me and fix it with surgery. Unfortunately the first back surgery caused a MS flare up and I fell 2 weeks after and herniated the disk in my back worse than it was before surgery. I'm glad to say the redo surgery went way better and I am free of pain. But my left leg dosen't work well (no strength, dropped foot, sometimes just plain dragging it around, but sometimes its completely normal) my neuro surgeon says its cause of my MS, my MS doctor says it's from my back. From my perspective, it is what it is at this point. It will either heal and go away or it wont.
I sinsearly hope they find your issue is caused from something they can fix instead of it being MS.
I wish you the best of luck and will look forward to an update from you saying that the problem isn't MS!
Good luck and keep us posted
Thank you for the reply Jason.
Were you able to return to work or any activities/sports?
I have returned to work (I have a desk job). I am also still active in my volunteer fire department but I have not been able to return to fire fighting yet, nor have I been able to return to any kind of sports activity. From what the doctors have told me it could take a year or more for the nerves to heal. Once the weather here cools off I'm hoping it gets better. It's hard for me to know for sure because my MS heat intolerance has similar effects the last few years. It may be a case of my current issues are a little of both. I keep doing a little more at a time and am optimistic that it will eventually get back to normal.
I hope this helps you at least a little bit to understand what's going on with you.
I'm currently having difficulty getting a diagnosis, too. I'm having numbness and tingling, weakness on the right side of my body, fatigue, balance issues that make it difficult to walk, and muscle pain. I've had two brain MRIs with no changes, and MRIs of my cervical spine down to my lumbar spine. Insurance won't pay for any more scans this year.
I've seen three neurologists, a neurosurgeon (to examine an old syrinx on my spine to make sure it wasnt causing these issues), and an MS specialist. All say that MS is unlikely, because I don't fit the "normal pattern", although my research says that MS presents differently in everyone.
I share your frustration with getting a diagnosis. I hope you get answers soon!