- Hey there!
It has been such a long time since I have posted on my blog, & for that I apologise.
In the last 7 months since I posted, I have been through so much that I am not actually quite sure where to start. I can't even quite remember where I left things, that is exactly how long it has been. so I guess I am just going to start off from the beginning & hope that you all catch up. ;)
The last time I posted on here I was having problems with my left side, my headaches were at their worst & I was so low! Late last year I was rushed to the LGI with a suspected stroke, thankfully it wasn't a stroke, but the stroke team that I spoke to did mention "Hemiplegic Migraine" I of course at the time, thought absolutely nothing about this & from there is when my neurosurgeon ordered for me to have a few MRI scans on my neck, spine & brain!
After 3 months of backwards & forwards to the hospital having scans, my neurosurgeon found nothing - which I guess is a good thing, but in another it wasn't, not for me who was suffering these symptoms on a daily basis.. so he then referred me to a Neurologist, who again did tests on me, & in January 2017, she diagnosed me with FND - (Functional Neurological Disorder) at the time, (January) I accepted this diagnosed & got on with life.
Now it seems, 6 months later, my headaches are back with a vengeance, I can barely use my left side AT ALL, so I am having to struggle using my right side, which is a massive pain in the arse when you're left handed!! & I am constantly suffering with leg, arm & face spasms, nausea & dizziness. I was taken back into hospital in May after suffering with a migraine for 12 days - I panicked that it was my shunts, so they took me in & did tests, but nope! my shunts were working just fine, so here I am in July, still suffering these horrendous symptoms that in my gut I know aren't "FND" because it's getting worse & worse, & now my neurosurgeon has decided that because I missed my last appointment - due a to a migraine, IRONIC! he is now not sending me out anymore appointments.
Luckily though, I have been speaking to one of my best friends, who's mum suffers with Hemiplegic Migraine! I sent her a video of my last episode, when my entire left side of my face & neck where in spasm for a good 30 minutes, & she has said that what she saw from that video of me has completely reminded her of her mum, so she sent me a link for Hemiplegic Migraine - which is a rare condition & my symptoms fit like a jigsaw piece!
How weird is it, that a few months ago, a man from the stroke team at LGI mentioned "Hemiplegic Migraine," (that obviously wasn't passed on to my neurosurgeon,) & then a few months later, I get speaking to someone who's mum suffers with the condition!
so I am now going to be going to my doctor & asking to be tested for it, or whatever it is that they need to do to get me diagnosed, because I honestly can't live like this anymore.... I fell down the stairs last week, & have ONLY JUST been able to move around again without agonizing pain!
I am just sick of living like this... in the last 12 months, my husband has become my carer, because I can hardly do anything for myself anymore, I struggle to get dressed, I can't get out of bed on my own, I can't even be LEFT on my own, because I do stupid stuff like fall down the stairs!! I just want to feel slightly normal again... & I know for a fact that I don't have FND!! that is just a neurosurgeons' posh way of saying,
"I can't be arsed dealing with you because you don't need surgery" if you ask me!
I have an appointment with my doctor on Monday to speak with him about it all,
so I shall keep you all updated! (if anyone even follows my blog anymore!)
Thank you for reading & see you next time! xo
