Newbie 😺
Hi
Just joined and I can see from looking, that this is the place I need to be.... I was diagnosed around 4 yrs ago with the dreaded FND and an MRI scan showed MS lesions, the neurologist glossed over those told me to carry on living!
OK, so I did, I fought every day, I have 2 children so no choice there, but weird stuff keeps happening, total body shut downs, speech slurring, swallow troubles, hand cramps, brain exhaustion beyond fatigue, memory closure, manic panic as I can't remember what task I am doing and I'm talking like making a chilli for dinner, tics, spasms, crawly feelings, eye aura, jellyfish brain stings, intense migraine not fixed by migraine meds (possibly lesion formation)... yeah so a load of stuff....
So I'm scrolling and reading that maybe the MS lesions are a little more active than the neurologist said they were, or is it the FND, therein lies the question, who else has complex multiple chronic illness and receives appropriate medical or alternative intervention? I am deteriorating and I need to stop the process, I have too much live to live and way too much to give to be defeated by any of the above.... oh and I carry Arthritis, Fibromyalgia, Asthma, Chronic Cough, High BP, Hayfever and Migraine, so call me the Queen of Chronic, gotta laugh or you'd cry peeps xx
Did you get a contrast when you had your MRI? That shows active lesions and not just old ones which gives drs a better idea of what is currently going on. Also I’ve seen my MRIs and the medical reports which say there are a few are very conservative as I was shocked by how many there were so I think there is a tendency to be very conservative. Keep contacting the MS team/ keep going to the GP with your symptoms that you need managed. I def find that with the NHS you really need to be a squeaky wheel to get the oil!
I was told in the ER about FND since non of my MRI pinpoint MS however my conduction test stated it was to do with Central Nerve System and Lumbar puncture came back with 16 bands so me my Neurologist is saying I may have both but can’t confirm as there were more cultures had had not come so I need to go back in two weeks but in the meantime I have an appointment with a movement neurologist as she had referred me to one but the didn’t have availability till December so I looked up my own and printed all reports to go over it tomorrow so will see now. Just frustres as I been going through so much since January barely no voice, numbness, spasity, tingling, spasms, leg gives out, now tremors, light sensitivity, lost peripheral vision, headaches and it goes on just down hill as each month goes on.. need answers or treatment or something