Tired of being tired

Hi everyone, im Lisa i am 40 years old (but feel alot older physically).
Ive been struggling around 3 years now and i am just tired of it all :pensive:
Looking back the first red flag was like a malfunctioning in my brain as i couldnt sit or stand without being light headed if i tried walking i walked very slow of to my left i was hospitalised and treated for viral meningitis after 3 different drs thought i had it. 6 days in and the spinal fluid they took showed nothing. The next couple of months was draining and i then had to go back to hospital as my right side went numb and i was shaking i had pins and needles and numbness even though i could still move my arm and legs and blood flow was fine the dr at the hospital referred me to neurology as he said this is definitely neurological, after along wait and struggling i eventually was diagnosed over a year ago with FND and that was it was left to deal with it.
Ive been back to my GP numerous times as my tremour in my right hand is getting worse ( i broke my finger peeling potatoes as i dont feel like i have full feeling/control in my hand) Im constantly tired (all bloods normal as they always do blood test) im struggling with balance some days and sometimes when i go to walk my left leg doesnt follow so have to catch myself. I get hot patches like im stood next to a fire or i feel like a wet patch, i struggle to lift my left leg in bed and the jerks and spasm are hard to deal with, only had it once when stood talking to colleagues but i get them when im in bed trying to relax all the time, my memory is getting bad and ive started to struggle remembering words.
I have finally been referred back to neurology and my appointment is this coming monday.
I think ive come on here just to talk and read with people who are going through the same i think deep down i know its EOPD and i just want to know because its so tiring and im currently of work on sick because its all become to much
Anyone else had to wait so long, received wrong diagnoses or just experienced the same sort of symptoms
TiA Lisa

Hi and welcome to our forum, @Lisa82 . You’ll find everyone very friendly and supportive and I’m sure someone will be along soon to let you know what their own experience has been.

It really does sound like you’ve been through the wringer and I can’t imagine how stressful this has been for you. Of course, only a doctor can diagnose Parkinson’s and waiting an appointment can make time seem to stretch uncomfortably. However, Monday is almost here and I hope you can get some answers then.

The three main symptoms of Parkinson’s are tremor, slowness of movement and stiffness. You can read more at this link: https://www.parkinsons.org.uk/information-and-support/do-i-have-parkinsons. Feel free to explore the site for much more.

Welcome again. Don’t forget to tell us how Monday goes.

Take care
Forum Moderation Team.

Hello Lisa. I feel I am in the same boat as you. I am new here and have not been officially diagnosed. I have been under a neurologist for several years and have received different diagnosis at different visits.
My main problem is movement, especially rigidity which makes movement difficult, especially first thing in the morning. My body is so stiff it is painful. I have quite bad restless leg syndrome which is treated with rotigotine patches. I also have other things going on. I was diagnosed with FMD but my
Neurologist thinks I may have developed a parkinson’s syndrome. The upshot is I am waiting for a Datscan to help towards diagnosis. This was requested last November but I will have to wait until later this year for an appointment as there is such a backlog. I should be seeing my neuro this month to discuss the results, but I doubt she will see me. My annual appointments always get pushed to 18 months because they are so busy and I am lucky if I get 15 minutes to discuss the situation. I feel so much in limbo, perhaps missing out on meds that may help me.
I have been told it is possible to have FND and parkinsons so I hope you get some answers. Good luck tomorrow.