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rrms, going downhill fast

i was diagnosed rrms quite a few months ago by the neurophysiology dr, a couple of months after things kept going down hill, im sleeping more and more, im not eating properly as im too damn tired all the time, i now need someone to keep calling me everyday to remind me about taking my tablets 3 times a day coz i dont remember n everythin gets too confusing, i get mixed up with what ive managed to do to what i think ive done, its taking too much energy just to get dressed and stay awake, my bladder accidents are getting much worse now, i was supposed to have a bladder scan to find out why, but i tried to rearrange the appointment with the ms nurse, the ms nurse was out of the office so i spoke to someone else, they said they dont rearrange appointments and im to call the hospital, i called the hospital and they said they dont do bladder scans and did i have the right hospital, so i read her the letter i was sent, all i got was sorry but you’l have to call the ms nurse again and sort it out, so i called the nurses office again and ended up talkin to someone different with the same reply…we dont rearrange appointments so call the hospital, i explained what i told the hospital and all i got was…sorry but we cant help, so i never got the blader scan i needed, my arms keep getting weaker and i have to keep taking more n more breaks just to do simple things, im now havin to use 2 crutches just to get around the flat as i keep falling over and my legs just give up on me and outside and have to rely on taxis just to get around, the drs put me on antipsychotic medication now again, between them and the painkillers daily, its gettin too much, ive tried getting help from social services but they cant help me they said, im seeing the ms lot in birmingham next month to go on dmd’s and seeing the neuro dr a week after that, i just feel like im gettin too much worse too quickly and i hate it, i cant get any help from any where, ive been calling the ms nurse, hes either out of the ofice and they will take a message, hes busy at the moment or hes in a meeting and will call back later, to all of these i never get a reply, so im stuck with all this crap and getting no help or just geting the run around so i cannot get the help i really need now

Oh dear, you are in a terrible situation and getting nowhere fast.

I take it you live alone, yeh?

I was going to suggest you try for Direct Payments. I use this money to pay for carers. 1 comes in every morning, to get me up, toileted, showered and dressed.

2 other carers take me out once or twice a week and 1 of them does a sleepover, to give my hubby a rest. This all comes to 16.75 hours a week, plus the sleepover.

Have you tried to get help like this at all? Do you think it would help you?

If you ring Social Services,and ask for an assessment for DPs. a social worker will come out and see you at home.

Your mobility sounds really poor and you are at risk of hurting yourself. maybe a wheelchair will help, do you think?

I have no mobility and am a full time wheelie user.

Keep trying to speak to your MS nurse.

Or what about seeing your GP and tell him/her that you feel you aren`t getting any help and are falling all the time?

I can see that things can`t go on as they are.

pollx

i called social services for help, i got the reply of im sorry but we cant help you, this reminded me to call them again and i got the same crap, sorry but we cant help blah blah blah, im in a flat and a wheelchair cannot get around as my mums tried before a while back, so thats out the question, im getting a letter from my dr to prove wat my conditions are so i can move to a smaller ground floor flat, the council keep refusing me a move as i have a cat, so they said unless i get rid of him or give him to someone else then they will refuse me a move altho im trying to get one on health grounds, im being screwed from every direction and not getting any help from anyone, mum n dad get direct payments and now need more help, they asked her social worker and was told as the funding was cut they wont get any extra help, so that doesnt surprise me when social services told me they cant help, im stuck in a big flat i need to get out of, a wheelchair cant get round in it, im a disaster on my legs, i live on my own with my cat, just a typical example of someone needing help and wen u cry out for help ur either ignored or told no chance

Oh luv, this is a sad story.

I know when I asked for more help, as my hubby bears the brunt of all my needs, when carers have gone and he is weary, with his own health problems, I was warned I could lose some of what I already have!

Makes no sense, I know.

i guess you have tried all the roads I can think of. Sorry.

pollx

its ok hun hun, maybe if i get pushed too much and have another breakdown i might get a lil help, i just hope it doesnt get that far this time again :frowning:

I am sorry to hear you are having such a bad time. I recognise some of what you are going through, but in times of crisis you (as no-one else will do it for you), may want to draw up an action plan in order to priortize your problems, to prevent you being overwhelmed. I suffered my first MS attack in 2009 and this was followed by 2 further attacks in quick succession, is this similar to what happened to you?, as you seem to have gone downhill quite fast. I was offered Tysabri and despite the risks thought I had little choice as like you I couldn’t really walk and spent all my time resting. In my mind and I accept other peoples opinions regarding DMD’s, this was the best option for me, after several months it stopped the relapses. This gave me the ability to focus on my next problem, and so I took on my problems one at a time which is the only way I could cope. Not walking and bladder problems are a terrible mix but you seem to be on the right track. I wish you well, Peter.

Hi OBM

If the hospital are messing you about, get on to PALS (should come up on the hospital home page on the net), it is their job to sort this sort of thing out.

If social services are messing you about, then the first call should be to your local councillor, the second to your MP’s office, and after that - if you want to go for the throat - the local media.

One thing that seems to work well is if a friend posts on Facebook or Twitter (especially Twitter) that you are getting messed about. Don’t post it yourself.

Geoff

I priortise everythin I do, I’m strugglin that’s why I’m askin for help coz its gettin too much now n I’m gettin fobbed off or given the run around, I’m doin everythin I can do myself…I emailed my local councilor many months ago coz of atos lying on my assesment and failing me and I got the basic reply of I’m sorry I canyt help, go see the cab instead as I can’t do nothing, so how am I supposed to do a action plan thatys supposed to include ppl n places that SHOULD be helping that won’t, as I said I’m doin everythin myself I prioritse everythin I do to try to conserve energy but I’m still strugling badly. So I’m doin everythin I’m supposed to

I am sorry that things are such a struggle. I bumped into my MS nurse at my local therapy centre today and she mentioned her voicemail was full of messages, it was her first day back from holiday. She is great and sorted out steroids when I needed them and when I was very ill arranged for me to go into hospital where I got rehab. My neurologist sorted out my DMD and he and my GP helped with ill health retirement forms. What I have found is there are things they can do and things they cant. Your neurolgist is looking at your options so you have a timetable for this. I am sure your MS nurse will sort out an appointment with the bladder and bowel nurse, from experiance this takes a few months to happen. I had to give my cats away so I know what a wrench that is. Social services are stretched but I have always found them slow but helpful. I was stuck indoors but I have recovered enough to get to my local MS therapy centre which is a godsend, worth finding out the nearest one to you. Most people at ours get funding via direct payments. I am not in your shoes but I got no help either and managed to make progress so I am sure you can. We are here for you and there are people who can give you advise, particularly for specific issues.Peter.

Hi hun, so sorry to hear your having such a bad time. I work for social services. I am what used to be known as an unqualified social worker. Can I ask why they refused you? All councils have a criteria to who to provide to but it sounds like your situation still needs looking at and they cannot really make the decision based on you trying to manage. Xxx P.s direct payments are the way forward. I encourage my service users to look at this option. I know this is what I would want for myself. X

I’ve explained to them everything n that I’m struggling, they say they canty help me, my dr knows how bad things are n my neuro dr knows I’m goin downhill, I’m goin no where fast, my mums carer she has with direct payments knows its gettin harder for ppl to be gettin help, social services gave me no reasons to why they can’t help, all they keep saying is sorry but they can’t help, there’s never bin any mention of them even coming to do a assesment, I never can get that far with them, looks like ill just keep goin as I am n let things get worse coz I’m not gettin any help at all, I give up asking coz I get the same crap over n over again or get the run around, I’m sick of it, I didn’t ask for this ms bullcrap

no one asked for this bullcrap. its life and the card we are delt.

has your gp not reffered you to social services? this is just terrable the way they are treating you. in this day and age things like this should not happen. its like going back 50 years. maybe you should try the local media route. it might just kick their arses into toutch

i do wish you good luck.

god bless MTT

This is no time for giving up…not yet anyway. Contact NICE ( national institute for clinical excellence). It clearly states on there website the type of care people with multiple sclerosis should expect to receive. NICE’s role is to improve outcomes for people using the NHS and other public health and social care services. Find a bit of energy from somewhere and think big…start rattling a few cages!!! There Email address…nice@nice.org.uk tell them everything you’ve been sharing on here. If you prefer to ring, the number is +44(0)8450037780 Years ago my husband had an operation that nearly killed him…its left him with a lifetime of ill health. It took years to fight for justice…there were times we wanted to give up. We didn’t!! What’s happening to you is not right, so go higher up the chain and sort it. All the best to you

Me again;

I thought the Social Services had a duty of care to people asking for help…?

pollx

lol yeah me too, i scoured there website last night, they are SUPPOSED to help ppl with ms, i checked the independant living fund website aswell n they have permanently closed all applications to any new applications, so tomoro im calling them again n bein polite but forceful in getting help, im sick of being fobbed off with sorry we cant help wen i know they can, i can get help from a disability centre near me aswell, but im leavin them till the last resort as they refused me any help last time i crawled into there office, there reply was…i dont look that bad therefor they wont help me, if crying n begging for help isnt working then its time for me to get difficult now, im not begging for the basic help anymore

My husband had terrible bladder issues which we struggled with for ages. It looked like it was incontinence. We contacted the continence clinic direct for advice and had a nurse come to the house. They brought a mobile ultrasound with them and it turned out he was retaining a litre and the incontinence was the overspill. The recommended intermittent self catheterisation which had changed our lives. My husband doesn’t have the manual dexterity to catheterise himself so the district nurses come daily to support when I’m at work. Sorry for the ramble but what I’m trying to say is we have not seen the MS nurse for three years but your GP can refer you or call and make yourself known to the continence service. Dealing with it has massively improved my husbands quality of life and you shouldn’t have to suffer like you are. More importantly retaining urine puts you at risk of infection and your GP needs to sort it now.

Me again.

Not wanting to cause offence, hun, but when you speak to all these bods for help, do you do so politely, calmy and in a quiet way?

I ask because I am really wondering why none of them will help you.

Sorry, dont mean to upset you.

pollx

I’m shocked to hear that a disability centre told you, you didn’t look bad enough so they wouldn’t help you…they of all people must know that like mental health some disability don’t show to onlookers. I really am amazed!! You do seem to be having a run of very bad luck.

i do talk to them nicely, i have from the start, im very polite with my asking for help coz i dont think that gettin really nasty n shoutin helps anyone, its only wen i keep gettin fobbed off that i get frustrated n start crying coz i cant get the help i need, even then i apologise to them for crying n that im frustrated

as mums got a social worker im askin mum to help me to try to get help from social services and the disability centre as she gets help from both places, hopefully somethin may happen