Hi, in the past year I have gone from the neurologist being almost certain I don’t have ms, to the neurologist being 99.9 percent sure I do have ms due to “inflammation on my brain” which my own gp described as lesions. I have had lumbar puncture done and repeat MRI of brain, cervical spine and thoracic spine with contrast and was told results would be sent to my neurologist in 2 weeks. I am finding it really difficult at work due to extreme fatigue and getting time off for appointments isn’t always as easy as I had hoped. Certain symptoms are causing me difficulties in my job to. My boss does not know ms is suspected as I was advised until it’s in black and white to limit what I tell my employer also as I told him to much in the beginning when neuro. Told me he was almost certain I didn’t have anything serious wrong I am worried when I do tell him I will look like a liar. My main question is really how long after your MRI did your neuro call for you to go in for appointment to discuss diagnosis? Also, how did you tell your employer? Am I best seeking advice on this from a union etc? Thank you.
With regard to your wait between MRI and neurologist appointment, that depends on your local area. You could phone either the hospital appointments team or the neurologists secretary to ask how long it will take.
Meanwhile you could start looking at the disease modifying drugs available (assuming you are diagnosed with MS). See MS Decisions aid | MS Trust
Your employer will be required to make any necessary adjustments once you are diagnosed. Other people will know way more than me about access to work and advice on actually notifying your employer. I don’t think you will look like you’ve lied, the fact is that the neurologist has changed his mind. And you will have that information in writing, because the neurologist will copy you in to all letters that are sent to your GP.
Best of luck.
Sue