Hi I’m new…
I need clarification on whether I have MS, I’m so confused! (Currently waiting for a call back from one of my consultant’s team)
I received a letter this week (which I’ve paraphrased below)
I can confirm that there have been further changes in the appearance of your brain and spine in keeping with a diagnosis of Multiple Sclerosis. The scans were compared to those done in 2016. There are several lesions in your spinal cord which would explain your symptoms.
Further treatment is suggested to prevent further inflammatory episodes:
Beta interferon injections or Ocrelizumab.
Your case will be reviewed at our MS-MDT meeting and then treatment will be discussed in clinic.
I spoke to the Secretary to ask whether I had MS, she says she is not medically trained but is reading it from my point of view (yes) and only MS patients are discussed at the MDT. She will get someone to call back to offer clarity.
At my last appointment I was advised if I presented with the symptoms I had way back in 2014 now, I would have been diagnosed due to change in criteria.
Background about me:
2014 - Loss of sight, lhermitte’s sign, tight squeezing around middle with loss of feeling down right side
2015 - continued lhermitte’s sign, loss of feeling in legs (when active), positive OG bands in CSF as well as lesion found in CS
2016- further MRI’s no action, offered pain killers but refused as i didn’t want to be a zombie. Dropped off my consultants radar.
2018 - Father diagnosed with MS following MRI’s for unrelated condition, transferred to his consultants care
2019 - continued lhermitte’s, bladder issues, extreme tiredness, lack of concentration etc - above results on MRI.