Hi everyone
Im Emma, 25 and a mummy to two beautiful girls.
I’ve actually been coming on this site for a couple of years but never posted.
I have been experiencing symptoms for 5 years now, some being - fatigue, pins and needles, body vibrating (like I’ve been on a vibration plate) stabbing pain in jaw, muscle pain, blurred right eye, burning patches on my right foot, hand and head. The latest being the worse where I was admitted to hospital for 4 days as I suffered with right sided weakness/heaviness. (I find it so hard to describe to people the feeling). Anyway after blood tests, brain MRI and ruling out stroke the neurologist said he didn’t think it was ms and he diagnosed me with severe migraines which cause temporary paralysis. I’ve been described amitryptiline but I don’t feel these are working.
Ms has been mentioned a few times but previous scan and lumbar puncture was clear. Of course I’m not looking for it to be Ms, however I do feel ‘fobbed off’ with the severe migraines.
I came out of hospital 3 weeks ago and although my movement is better it is no way near 100%. i have a spinal MRI booked for 29th August.
Thank you for reading.
Emma
I relate to most of your symptoms. Will you be seeing a neuro again after your MRI or will you be discharged back to your GP afterwards if it is clear? I was diagnosed with Functional Neurological Disorder in January but developed new symptoms in March, so I’ve been referred back (to a different neurologist at my request). This time, I’m not settling for a diagnosis because of clear tests. FND is supposed to be diagnosed with positive signs but if they were there, it was not communicated to me. Ask for the reasoning behind the diagnosis and if it is something that they can provide positive evidence for. My own differential was between FND and MS and I am well aware that there are more tests that they could do to rule out or confirm MS. As parents, we have to look after ourselves first so that we are able to look after our children well. Keep looking for an answer if the one given doesn’t feel right and ask for the reasoning behind any offered diagnosis. Best of luck x