Hi All, Hope everyone is coping/keeping as well as possible. I will try to make this as short as possible! Coming up to almost two years ago I was struggling with extreme fatigue, odd sensations, stroke like headache and leg weakness. I had an Mri which showed some abnormalities with the cause unknown! I then had a lumbar puncture which showed matching oligoclonal bands again - unknown cause but M.S unlikely. The Neurologist at the time said he thought I had a condition “Bodily distress syndrome” and discharged me. Roll on around 12 months later and I was referred to a M.E/C.F.S specialist who confirmed I fitted the criteria of M.E therefore was my diagnosis! I have been struggling to return to work with the constant pain and fatigue along with many other symptoms which is so debilitating. I have been unable to return to work and progress towards a minimum contract and therefore am waiting to be “Dismissed” on the fact I am unable to fuffil my contract. Having since been referred back to a Neurologist I have had a further Mri (which apparently was advised anyway) and an EER test. I do not know the results of these yet and am awaiting an appoitment to discuss results when they recieve them. I know that from my neurologist visit he noted that I was hyperreflexic, particularly on the left. I had positive finger, pectoralis and crossed adductor reflexes and my left plantar was extensor. My main weakness is my left side. Im a bit concerned that I may just be fobbed off again when clearly something isnt right. Does anyone have any words of advice on what may be going on. Have any of you had any of these problems? I dont know where to turn next. Many thanks for any replies. Lisa
Hello Lisa,
It’s so tuff not knowing whats going on with us, I can sympathise with you as I am in the same boat as you. I have some diagnosis’s ie AF, Meniere’s Desease and Spondilytis in my neck and lower back which traps nerves in my spine. So I have decided to concentrate on these and the only thing after that is for me to wait and see and hope what ever I have on top will show its self eventually. Its working for me at the moment and helping me keep my sanity. I have had my contract terminated due to being unable to fulfill my jobs needs. Managed to sell my house before it happened. Could not get my pension though without a more serious illness diagnosed. Fought for ESA as thank heavens they look at symptoms rather than any diagnosis. I hope you find your self some solutions to make things bearable.
Catherine xx
Hi Catherine, Thank you for your reply. There seems to be so many of us in the same boat of being in limbo etc. We must try and stay positive and hope some day soon that we will know what is wrong with us. Lisa x
Hi guys, been reading this forum for a while now, feel like a bit of an interloper as not had final ms diagnosis but as this is my 2nd attack and told 5years ago another attack would make diagnosis of ms, I decided to join.
You guys are all amazing and reading your stories has pushed me into dipping toe in the water!!!
I’m stuck in that horrible limbo land many of you know so well, stuck at home, in pain, unable to work, waiting for neuro’s app following MRI, watching bills pile up and wanting to SCREAM!!!
Don’t get me wrong…work being supportive(but not paying me) friends great,kids wonderful, but- just tried to put earrings in and I can’t feel the bloody things!! Then, trying to open and close back door for the dogs and the handle HURTS!!!
Sensory Myelitis affected whole body 5years ago and left me with permanently damaged hands! Sensations all to cock!!!
Found myself crying and ranting with frustration. This latest episode has me in such serious pain in my side that I had surgery to find cause,only to be told pain not organ specific,hence MRI for neurological cause. Still can’t believe a pain this localised and severe could be caused by my spinal cord but my surgeon spoke to my neuro and neuro has written he believes it cord related and so that would be my 2nd attack…so here we go,one step closer to diagnosis…but still,no doubt,weeks away from final answers!!! So frustrated.
So here I am, would love to compare notes with someone, although not sure how I read posts to me!!!
Hope screen flashes up or I’ll miss you!
Regards to you all,
Ive realised we’re not priority because ms isn’t considered life threatening but it sure as hell is life stuffing!!! X
hi lorraine
you need to keep yourself busy and rested.
sounds contradictory? welcome to my life!
you will see any messages you have responded to on the first page when you log in.
i’m just 8 years post dx. it was a great relief because i really doubted my sanity.
i go on about mindfulness meditation because it has been a great help to me.
i did the breathworks mindfulness for pain relief course.
on a lighter note pete in cold feet has been doing mindfulness, his wife jenny was funny as she is so sceptical.
my mp3 with my mindfulness on it needs charging and the bloody charger has gone missing.
try to stay calm as stress is the enemy.
christmas is coming like it or not so do try to stay calm.
i will send you a pm (private message) you do not need to reply unless you want to.
good luck
carole x