I was training for a marathon when I went to the doctors about a weird tingling sensation that I was having in my thighs that came about when I bent my neck. I was sent to Physio. From there my concern was referred to neurology and an MRI was booked.
The results came back. After a series of MRI scans; one for my brain, I have lesions (size and amount unknown) and two scans of my spine (I have demyelination on my cervical spine-point unknown). On the 23rd of March this year I was diagnosed with MS. I was told over the phone. I was told I am suffering from L’hermitte’s phenomenon and tingling hands. which after a short bout of a cold has progressed to occasional loss of function in my arms and hands. I find that this would last for at least an hour or so. My diagnosis was prescribed a course of methyprednisolone 500mg for 5 days to ease the inflammation.
The pills were frighting as I have never felt so mentally altered, extremely flat and disconnected. It took me 5 days to take the pills and a further two weeks to get over them. They sadly didn’t seem to work for me as my hands are still tingling the L’hermitte’s is still there and my right hand occasional goes numb from the shoulder to my finger tips and contorts uncontrollably (this can last at least half and hour then a further hour to regain feeling).
I have not seen a single person since being diagnosed. No support, no clear understanding of what type of MS I have, no idea what to do to move myself out of this slump I am in. I am a single mother who split up with my partner of 10 years last year so I more that you can imagine- feel so alone.
All I was told in a letter is that I will be referred to an MS consultant. After phoning numerous teams to get some insight I have been told that my appointment will take place on the 12 of July.This seems like a very long time to leave someone once you have just told them that they have an incurable diseases. has anyone suffered this. I am so lost, in a state of limbo and I am exhausted. what happens now? Is that it?