hi, im still in limbo… Only been since all started May but its seemed be long 5 weeks since last saw neuro. Awaiting 2nd MRI results from aug, stuck in back log told last wk, plus blood tests not back yet from oxford as they wanting rule out NMO and anti MOG before giving diagnosis i think. Only things know are dysfunctional optic nerve and positive o bands and Myelitis. Meant be seeing neuro mid Oct but wait seems so long and they can’t see me til results all back, so no date given yet… I’m just bit fed up, bit low, symptoms getting me down, more than TIRED! been trying get back to work for 6 weeks, they being v slow doing risk assessment that occy health want done before give me date go back. It’s v hard as been off work a year now. I feel able try phased return but they seem freaked by my disabilities! Keep saying don’t think i should go back til had diagnosis…told them that could be years!! But not listening…ironic this is Drs surgery i work at! Feel very unsupported by them and occ health. Sorry for the moan, I’m just bit low. Anyone else in limbo and just get tired and fed up with waiting? I just want know what’s wrong so i can at least know what dealing with…
You are not alone in this, the past year for me seems to have been nothing but waiting. A lot of people seem to go through similar. It’s hellish, but it does end eventually.
Yes, every day feels so long… putting up with symptoms is v wearing. Pins and needles all over some days, like ants crawling. Trying distract myself is so tiring. But i know it will all pass one day. Thanks yr reply, i know there’s lot on here similar place. My Dr been using term Probable MS in a physio referral…he seems know more than i do! No way hurrying things, just gotta keep busy. Have started an art therapy course, best thing i done i think, keep brain off whether postman going deliver or not. I need to get a life!
hey jules
i was bought a massive set of art materials by my best friend when i got my diagnosis.
went to the tate modern last week and decided that i would do a painting of what my symptoms feel like.
i can’t explain them in words.
so my first one is going to be my legs dissolving (that’s how they feel).
thinking watercolour wet on wet.
Hi Julesgazz,
The title of this post made me smile and feel sad all at the same time.
Yep. Tired of the symptoms, tired of the wait, tired of the tests, and just bone achingly tired every day.
My journey has been three years, less than some. Only getting answers now. But the wait on test results is agonising, I sympathise. There’s no helping it. It’s horrible. Know you have our support. Xx
Hi,
Although I’m not in limbo (I was diagnosed PPMS ten years ago) your description of “ants crawling” is exactly how I describe the sensation.
Anthony
Hi, yes, Carole good idea painting your feelings, re legs, yes mine feel starting to vanish. I’ve got pastels…workbook and colours, but yet to start but art course setting me on track. Good have focus. What lovely present, i may start a list of art materials i need. Kate, thx your reply, sorry you been in limbo so long, hope you can get thru soon, but then none of us really want a diagnosis… i feel sad and tired but finding new ways cope. I’m relatively new limbo so I’m realising there’s no easy or quick answers, altho does look like i had first relapse in 2012 which was missed by hosp to follow up… So that’s 6 years before recent attack. Anthony, learningto live with the ants crawling scenario is difficult but i just gotta keep trying. Learning pacing re fatigue is biggest challenge. Had last 3 days sleeping all afternoon and night, as i overdid it Monday morn. Tried to walk home from Drs, as missed bus, half way back my legs felt like jelly and been weak since. Live and learn, wait next bus next time! Thx all your replies. Julie