Hi I would really like some advice My husband went to party in the park ( some live bands in our local park in Falmouth) We sat on the grass and I just couldn’t support my body I kept falling backwards ending up lying flat on my back as if all the muscles in my back had just melted Then there was trying to get up!! I just couldn’t do it no matter how hard I tried some locals managed to haul me to my feet Got straight in the car and then we got to the house Chris dropped me at the gate and went to park (its only on street parking) whilst I was trying to walk down the path ( which I have done a million times safely) My legs turned to jelly and down I went No matter how hard I tried I couldn’t get up Chris arrived and tried to pull me up but he has not long had a serious cardiac arrest So I crawled down the garden path until I could get inside and pull myself up on the stair rail The question is who do I tell? I felt so numb and miserable I couldn’t even cry! Should I leave things a few days and see if it gets better Or should I contact the GP or the MS nurse Feeling overwhelmed and scared If got this far thank you for reading you Jane
If you have ms, my suggestion would be to ring the ms nurse. At the very least they could offer some reassurance.
Ms does have lots of twist and turns, but if you experience anything out of the ordinary, surely it needs mentioning.
It’s been rather hot lately and many of us MSers tend to suffer badly in the heat, or with Uhtoffs phenomenon, if you prefer.
Hopefully, the weather will improve next week and you start to improve.
Thank you for your replies, Yes I have an MS nurse (neurologist referred me) I was diagnosed 20yrs ago with a demyelinating disease and hughes syndrome They decided to treat it as a combined case of MS and hughes I was given pulsed prednisolone and 6mths cyclophosphamide After which point we moved house and the neurologist referred my care to my new local health authority (which never happened) I decided the best thing to do was just get on with things which worked quite well until last september when I became really sick again I was diagnosed with Neuromyelitis optica which has since been discounted Although I have many lesions in my spine and one in the brain stem that causes horrific TN Last appointment with Neurologist said he has no idea!! Now I have been referred to another neurologist at another hospital in a different city for his advice They have ordered a lumbar puncture and another MRI (last MRI was in February and last lumbar puncture was 20yrs ago) don’t know how long I will be waiting I’m pretty sure I will be given another diagnosis of MS as the last lumbar puncture contained oligoclonal bands but I believe they can test for much more these days so that’s where I’m up to really getting nowhere fast
Goodness, you seem to be on a bit of a hamster wheel. Diagnosed with ms but yet still proving so.
I wonder why the need for retesting, perhaps a change of care with moving areas dictates this, but then I’m no expert so just guessing,
I hope you pick up a clear care plan soon.
Thanks rogue I just want them to give me some treatment The new referral means I will probably see someone next spring so another 6 months without any help!
It makes no sense to have to be referred and wait until next spring… perhaps we just have to put all these long waits down to an over stretched NHS. Oh, and someone wanting to cross the Ts and dot the i’s … in your case.
Hang in there. If your symptoms get worse, chase things up.
Hi
I have had weakness in my limbs and core muscles including my neck. My nhs neurologist is questioning my ppms diagnosis and my private neurologist says i have ppms and is doing tests for another neurological condition. I have recently had 2 brain scans and one full spine scan. Next week i am having further tests. Your condition maybe
Very different from mine but they both require investigating. Could you contact your ms nurse and report your symptom changes…
Hope things go well for you.
Jane,
That sounds horrible. I would contact my MS nurse. They not only empathise but they have a range of experience and knowledge which might just offer some useful tips or support.
Good luck
Mick
Hi Jane
I’m not surprised you wanted to cry, it can be really unsettling when we suddenly find ourselves unable to do something - we feel very vulnerable
As Whammel said, the recent heat will have made things worse (it took me a couple weeks to fully recover after the heatwave a few weeks ago). So with some cooler weather and rest, things should improve. Still call your ms nurse though. And when you do, ask if you can be referred to a physio. They’ll be able to help you make best use of your muscles and improve your core stability. It’ll probably be a long wait though, so in the meantime look for some beginners Pilates lessons, or search on youtube, as it will help with core stability and balance.
Dan