Diagnosed but still in Limbo

Hello, this is my first post.

I’m a 25 Yo male, besides feeling a bit more tired than most of my friends I felt like i was quite healthy.

A quick summary of my journey so far.

Sometime in 2014 I awoke with the most painful headache I ever experienced, I thought i was about to die the pain was so intense. Between calling an ambulance and it arriving the pain completely disappeared, despite their recommendation i refused to go to the hospital for tests as I was in a probation period at a fantastic job and didn’t want to jeopardise my job.

The next day at work my left side went numb/pins and needles and I could barely speak. worrying about a stroke I went to A&E and after a night in the hospital a CT scan and a lumbar puncture, I was set free and told it may have been a migraine of some kind.

after a week of the terrible headaches, all symptoms disappeared, and I never really thought about what happened.

Flash forward to 09 jan 2016 - wake up in the morning and my right side begins to seizure, arm and legs tense up and hand curls into a claw(im not sure seizure is the right word, possibly spasm?) after this happens 3 times at various points in the day i decide to go to A & E. after a 3 hour wait i’m told it could be a calcium deficiency, decide to stop wasting time and just go home.

3-5 seizures over the next few days, progressing to 10 a day. various drs visits before they decide to set me up for a neurology appointment (wait was 55 days) only after literally having a seizure in front of the DR.

I decide to go private and get an MRI scan very quickly.

I don’t speak with a DR but receive a report that advises an urgent neurology referral.

Here are the details of the report.
"there are flame shaped hyperintesity lesions within the rostrum, genu and splenium of the corpos callosum. in addition there are multiple bilateral juxta-cortical lesions involving the “u fibers” in both the cerebral hemispheres affecting mainly posterior frontal and temporal lobes. in particular the lesion located near the central sulcus is affecting pre and post central gyrus and likely explain right arm symptoms. in addition, there are multiple septo-callosal, deep white matter periventricular lesions thorughout within the cerebral hemispheres. some of these lesions are perpendicular to the long axis of ventricles. few of these lesions demonstrate high signal on teh diffusion-weighted sequences especially ones in the left posterior frontal region, posterior deep white matter bilaterally and in the left thalamic region.

The overall appearances are in keeping with acute on chronic demylination"

Considering I had no idea at this point what was going on this was a scary report. upon taking it to my GP, he told me that i likely had MS and explained to me what is was and prescribed me some steroids to deal with the seizures (which worked very effectively) however he said I would need to urgently see a neurologist for a proper diagnosis - 2 weeks later I finally get to see the Neurologist and after a quick conversation he diagnoses me with RRMS.

I didn’t get to ask any of the questions I had planned before being pushed out the door. I was told I would start DMT - Plegridy injections at some point, after speaking with an MS nurse (2 more weeks wait).

I still feel in limbo, the questions I would like to ask the community;

  • Does this seem like MS?

  • Does the MRI scan report read similar to people with MS?

  • Will I be able to have a proper conversation with an MS nurse and ask questions?

  • Has anyone had a similar start to this disease?

  • My left hand is becoming increasingly numb could this be steroids or is this part of a relapse?

I appreciate any responses!

Thanks for reading.

Thanks for this.

Hmmm…i think you should take this to a medical tribunal. They should NEVER EVER treat you like that buddy.