Hi, I’m new here and been desperately searching for some advice and to be honest just a little bit of sanity and not feeling so alone … My partner was signed off sick from work in Oct for what everyone thought was a severe bout of flu but rather than take weeks off (only had the job for 3 mths) he took just 1 off and returned to work still not 100% but determined to not let his guys down (he’s a home carer) but after a hard and long weekend he collapsed as leaving for work and began almost convulsing and unable to stand. Anyway long story short he’s still signed off with some docs saying he’s possibly got MS, others reserving judgement or stumped and 1 at the start even said “it’s depression have a week or 2 off and you’ll be fine.”
We have managed to get a neuro appointment at the end of this month which the GP managed to bring forward from the end of march after pestering them for weeks to see him but that’s just to speak to someone and relay to them all the symptoms he’s experienced etc. He is now in a wheelchair most of the time when we go out as he just can’t walk far even with a stick or crutches as his legs go like jelly wobbling, tremors start and he gets so very tired its hard to keep him awake and there are some days I can’t even get him out of bed as his body won’t respond to him trying to move and as we live in a 2nd floor flat, most days he’s stuck inside as I can’t carry him up the 2 flights of stairs when he gets tired and his legs won’t do as they’re told.
Anyone else in limbo waiting to find out? Or can anyone enlighten me on how long it may take to find out if it is or not? We’ve been left to our own devises with no help so far and its starting to get rather wearing as his SSP will only last so long and without a ‘it is or it isn’t’ I’m now worrying about finances as well as his care and the effect it has on the rest of the family too.
You are not alone anymore as the people on here will help as much as they can. The good thing is that he has have a neuro appt’ where no doubt the neuro will request tests to be carried out. Things like a MRI, EEG, VEP and many other tests maybe even a LP. If the neuro suspects MS she/he should appoint a ms nurse but won’t give a proper dx without his medical history and the results of the tests which may take a while. So I would advise you to make a list of his symptoms the worst being the first, but don’t hand the list over, just tell the neuro from the list. The neuro would probably prescribe a drug to help with the symptoms. Fatigue is a major player in MS. Don’t lose heart we’re all thinking of you both and wish you the best,
It all sounds very scary, especially with the medics contradicting each other
A wee bit of hope for you (I hope)… The severity and extent of your partner’s symptoms and the sudden onset after some sort of virus might mean that he has ADEM, a one-off neurological attack. If it is ADEM, then you can expect some recovery and for it to never happen again. The other obvious possibility is that he has had a severe first attack of MS. The reason that this is hopeful is that, first, you can expect some recovery (although, like ADEM, it might take quite a long time) and second, some people never have a second attack and therefore never actually get MS.
So, there’s a reasonable chance that things will gradually improve and that it will never happen again.
The extent of the fatigue might mean that your partner has some sort of post-viral fatigue syndrome (not sure what the official term is); MS can cause pretty horrendous fatigue, but it can be worse in other conditions.
By seeing a neuro, you’re on the right path to getting some answers - hopefully an MRI will sort things out and you won’t have too long to wait. Do ask the neuro for help with symptoms - there are a load of meds available these days and neurophysio and proper aids can make the world of difference.
In the meantime, have you contacted Adult Social Services to see if they can help at all? It shouldn’t all be on you.
What a worry that your partner collapsed so suddenly in October. Karen is absolutely right, it could be a viral attack and a full recovery can be expected, even better if it’s not M.S.
It’s great news that you’re seeing the Neuro this month, take a list of all the symptoms your partner has suffered since October. Let the neuro know the first indication of illness was collapsing and going into a type of fit and the severity of being unable to stand up/walk since October. Give the Neuro full details of each medical person your partner has seen since he collapsed including who recommended & issued the wheelchair.
The Neuro will probably arrange a Contrast MRI scan, a CT Scan, Lumbar Puncture, Evoked Potential Tests (eye test), blood tests and any other tests to indicate what caused the collapse/fit and why his legs are so affected.
NOTE: If reception tell you they’ll post you the appointments, phone them every week until you get the appts. Likewise for the appointments for the scan results.
Contact Social Services to find out what support they will supply. Financially, SSP is paid for 26 weeks and then he can claim ESA. You can call Citizens Advice Bureau or check DWP website to see other financial help.
Let us know how you get on with the Neuro and Good Luck
Many thanks everyone, I can’t tell you what a relief it is to get it off my chest to people that won’t suck air through their teeth and say ‘oh no what you going to do if it is?’ and to hear about other possibilities that may not be MS. When he first went down and was rushed in they thought it was Guillian-Barre syndrome, malnutrition was also thrown in for good measure too so he had vein and arterial bloods taken and the results on those was ‘he is going to live forever’ and were all clear so they were a bit stumped.
We hadn’t thought about asking adult services as didn’t know we could before being told what was wrong with him, we have had to source the aids so far ourselves to keep him mobile (the crutches were mine from when I broke my foot and we’ve borrowed a chair and bought sticks) the only thing docs have given us are sick notes. The only good thing now is he can read the signs and knows his limitations so doesn’t push them so he hasn’t gone down hard again or had the ‘funky chicken groove’ back, he now sits and does as he’s told before they get that bad. He has his good days, his really good days and then his stay in bed days, the really good days are fantastic now because he can get about with a stick if he takes it easy but these are normally followed by a stay in bed day. We’re muddling through at the moment best we can and yes, I will keep you informed with what the consult says at the end of the month.
Hi Just an idea ( but it helped me) is to keep a daily diary so you have a record of symptoms and how he is on a daily basis, also you can see if anything in particular makes symptoms worse. It makes it clearer then as well to see the good days as well as the not so good. Good luck Maisiemoo x
I am no expert but the suddenness of his attack could like Karen said be ADEM or similarily something like transverse mylitis. If so then administration of IV steriods could help speed up the recovery and also make a full complete recovery more likely. Steriods have their best effect if given as soon as possible after the attack. I had an attack 4 years ago although not as severse as yours and when I eventually saw neuro the inflamation had gone so the neuro said it was too late for steriods as they would not be effective any more. I would go to casualty if I were you and dont hang about. I am still waiting for them to finally make up their mind exactly what I had! Still in Limbo!
Spikecat, I can’t imagine how stressful the last few months have been. And how disgraceful it is that you have been left to care for your husband with absolutely no support or help.
I really hope the neuro can give you some answers or at least put you on the correct path for diagnosis and treatment.
With regard to the diagnosis, mine took just under a year overall but the initial symptoms (numbness in leg) was put down to a bulging disc in my back. That was in Feb 12. I was fine again until Sep 12 when I got optic neuritis. In October I had blood tests and a brain and spine MRI and I went back to the neuro in Dec 12 where he gave me the diagnosis and I started treatment. So I from the time they suspected MS to diagnosis was less than 3 months.
I really hope you can get some answers. But in the meantime contact the local nurse (I’m in Ireland so not sure how it works in UK) to get some assistance with enabling you to care for you husband.
