I have been struggling more since October last year, walking ability, fatigue, balance mainly but this year things have deteriorated more than ever.
Since February fatigue has been immense to the point where my days have consisted of sleep and then sleeping through the night as well. Before this my fatigue was manageable to an extent. I tried every avenue to get an appt with my neurologist only to be told nothing available and i would have to wait until my next follow up in June. I called the MS nurse for advice, she returned my call after 2 weeks and said she couldn’t help.
Over the last 4 weeks things have got considerably worse.I can barely move around the house, am mostly in bed i’m so weak, it’s difficult to be upright. My chest feels weak and heart rate is fast and pounding, i become breathless on little exertion,even trying to eat is exhausting.I’ve become completely dependent.
I’m SP but really, progressing so fast ?I was able to go out and walk short distances with a stick not that long ago.
Anyway sod waiting for the NHS, i’ve managed to book a private appt for 3wks time. I can’t go on like this, i need some advice and support.
Sorry for the whinge but i’m at the end of my tether.
Have you seen your GP recently? If not, maybe he/she could help with managing your fatigue.
Looking at when your next nhs appointment is and when your private appointment is…there`s not a lot of time between the two. But perhaps you will be given a longer consultation.
Also, maybe an assessment from an OT could help you manage around the house better. Do you think so?
My goodness! Surely your GP can make a neurologist appointment or you. If they won’t make one for you surely they have got to make one when your GP requests it.
Hi, I’ve had something similar before when I was told by the NHS appointment bookings team there were no neurologist appointments available for many months. I asked the appointments team if I could go on a cancellation list and I would be willing to have an appointment at very short notice, should there be a cancellation. This worked, I got an appointment for 9am and 40 minutes drive away from my home.
I know you are spms, but do you think you are in some type of flare,i am spms but still have relapses,infact i think i am progressvie relapsing and not even spms like they said.
i am very much like you i need to be in bed nearly 24/7 i had a relapse after a throat abcess made me very ill at xmas.and at the moment i am very ill and weak,i am hoping and praying i get over this to a point cos its no fun at all.Whats making mine even worse is lots of added stress too.i wish i had some good advice for you,but all i can do is tell you to try and stay positive,hard at times i know.
It does not quite work that way, Florence.
Any neurologist wants a GP referral.
A private neurologist will see you as soon as possible.
An NHS neurologist has to see you within the time period laid down by the NHS - something like 19 weeks, I think.
All too often it’s the same neurologist.
A good one will then refer you to him/herself as an NHS patient, and tests (MRI, LP, blood) will get done somewhat quicker.
Sometimes you can beat the system (just) by finding out first which NHS hospital you want to come under, and getting referred to the appropriate private neuro.
Just a thought have you had your thyroid tested? I was dx with an underactive thyroid after having similar symptoms to you.
Mags xx
[/quote] Ditto B12. You can have B12 deficiency as well as MS and the symptoms for each are very similar. I know, I have MS, pernicious anaemia AND ordinary anaemia as well. ( Did someone just call house? )
I live in hope that this is a relapse and that i do get some sort of improvement because the weakness and fatigue is preventing me from doing much at all.
Thank you for your reply and kind words, wishing you well too.
From what you’ve wrote the standard of care you have received is appalling. I would be changing my neuro and MS Nurse pronto. You have a right to be treated anywhere in England so move. If your GP is un-supportive, again, find another one.
Thank you, i do feel very much that i have been failed and neglected by the medical system, especially reading other peoples experiences within the NHS.
It’s so frustrating when you are feeling so unwell and struggling with no support.
Your experience of SP is similar too my own, combined with a GP who has always been dismissive of any symptoms I’ve presented with in the past, and a lack of knowledge on my part. I’ve began to think I’ve been experiencing symptoms for a long time now and my GP is totally unaware of them! So I think I’ve been progressing for a lot longer than she knows.
The last few months I’ve been getting the most horrific constipation, I know there’s no point in going to the doctor because she’d only say “try allbran” (on top of figs, oranges, pears, pineapple and all manner of other fruit and fibre in my diet) I don’t think it’s a good idea)
My MS nurse runs fatigue management courses, but judging by the leaflets and booklets on the subject, I feel we’re quite patronised, most of the advice is stuff I’ve been doing for years (thinking I was weird) but even those are no longer helping me now. I’m currently sleeping 10+ hours a day, and still have s** all oomph.
The OT I saw was very nice, but didn’t offer me any assistance for my mobility and balance (which is causing big problems for me)
I’m sorry if I sound like Moaning Mini, and I’ve not offered anything constructive within the discussion, but I think a lot of us have a good reason to moan!
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