Hi ,
Im new here. I have a neurology consultation today and am really nervous.
I have been suffering mild symptoms for quite a few years but everything came to a head back in Sept.
I was rushed into the hospital in the middle of the night after having a seizure. I was conscious but uncontrollably jerking and convulsing.
The symptoms I had leading up to this were:
Extreme fatigue
Right Arm weak & not “working”
Tremor in both hands
Weakness in both my legs
Dizziness / unsteadiness
Strange sensations all through my body (creeping cold & crawling in my arms & legs, numbness in my scalp and face, pins & needles in my hands & electric shock sensations on the dole if my foot)
Muscle jerks & twitches all over my body
Strange sensation of feeling like things were moving in slow motion when I was walking and turned my head
I had a number of further seizure like episodes in hospital and had lots of bloods, EEG, ECG and a head MRI.
The results were all described to me as “reassuring”
The neuro consultant put my symptoms down to a virus and suggested my seizures were disassociative.
Whilst I was relieved they had found nothing sinister I was unconvinced with the prognosis of disassociative seizures as I have no history of stress trauma or mental health problemsand in addition My other symptoms were all (to me) very concerning.
I was sent home told to rest and get back to life, I would be reviewed in a number of weeks.
I have become progressively worse since Sept.
Crushing fatigue which has meant I have reduced my working hours and duties to do a little from home (I wanted to try and keep some kind of normality whilst I recovered / waited for my next appointment) and I have two small children who my husband and parents have had to do a large amount of the childcare for.
Continued seizures (I also can’t drive because of the seizures)
All of the above symptoms - shaky hands, stiff right hand, muscle jerks, weakness in my legs, dizziness, strange sensations all in my body, struggling to find words, frequent urination.
My GP is convinced my condition is neurological but said whilst it could be MS, the MRI results might rule that out, or I may need more imaging.
The last 3 months have been a nightmare I was pretty much fit and healthy leading a happy life with my kids and a good job then suddenly life has basically stopped and I’m limping along trying to keep my head above water.
I am seeing my consultant today and am so worried he will dismiss me again.
I want to know what a reassuring” head mri is and I want another of my head and spine.
Any advise for what I can ask or tips if he seems to be dismissing me?
Does anyone else here have experience of new inset seizure like activity with MS?
Sorry for such a rambling post, I’m just hoping someone will have advice for my appointment later, it’s been such a wait to see this guy so I don’t want to mess it up.
Thanks