hey everyone…I had not so good experience on sunday…went shops on my trike…came back…transferred to my wheelchair and realised I had hada huge leak of urine through the normal route…my clothes were soaked and my cushion and I had no idea it had happened. bearing in mind I have retention of urine and self catheterise through a stoma in my belly button…it’s most odd…my bladder wasnt full and am quite distressed by this. my left leg also went a bit odd…very tight and heavy feeling, and I cannot get my foot flat on the floor…today my leg is cold and feels sore in the muscles…I also have new numbness down below and a numb left buttock and numb back of left thigh and inside of leg up to groin. Continance nurse coming today and seeing gp who will hopefully request to neuros another app in clinic soon…my arm weakness is worse in left and to a point in right including fingers and co ordination…it’s making isc very difficult to say the least…wheelchair services cannot provide a temporary electric wheelie only a permanent one, which could takea year to get!! what use is that!? I don’t know if this arm prob is temp or not…I cannot buy one myself…but I can geta pair of wheels for my day chair that would self propel me but wheelchair people cannot assit in purchase of these…that would be the ideal solution … still waiting social services asses urgent. em
That sounds like something requiring investigation asap Anything sudden does. I hope the nurse & GP can help. Have you tried the MS Society helpline about sourcing a power chair? They might have some ideas? Karen x
Hey Karen thanks…I am quite happy to admit what happened on Sunday has shocked me somewhat…nurse came to see me today and she feels it’s a neuro problem from her experience of her patients with ms and spinal problems. I also told her of my prob on fri when I went to open my bowel I nearly passed out…wasn’t constipated or straining…sorry but need to be frank about this…we are all friends on here after all…she said its not normal… she wants me to see an urologyst ASAP so go arranging an urgent referal and she wants them to do nerve tests. she cannot advise in isc at present ut I may have to have a permanent catheter in my stoma as a short term measure…as long as I can use the lock thing to drain should be ok so she’s looking at that. she left me with some pads to use for when I go out.eeek!! she was going straight from mine to speak with the gp I saw later today… gp was amazing…glad I booked a slot with her two weeks ago…was just going to be a review…but we had much to go over. she’s going to write to the ortho dr and ask his opinion as to if I should see neurosurgeon soon as opposed to wait till after mris in august. …his letter was sublet but contained enough medical findings from his exam the neuros cannot ignore this. gp will copy this letter to both neuros…she’s chasing social services re care asses and thinks I should continue with process with wheelie but agrees I need something like now!! thanks will call ms help line tomorrow. also may be able to apply to access to work for the wonder wheels…lol gp checked leg…it’s very cold below the knee, very stiff also and thinks I could do with some physio on this…pulses are fine re circulation and it feels like lead…as does the right…but less so…I waited an hour and half to see my gp as she was running late but it was worth it…she’s a star…and all her patients who went in before me had some visable disability…and that says allot to me because she takes her time and all her slots are 20 mins. so things are moving forward. em
Sounds like you’ve got some really good professionals on your side there Em. Fingers crossed they can get things moving asap for you. Kx
awww bless you lovely Em x wish I could do something to help you xx that all sounds so very scary xx hope they sort it for you soon xxjenxx
You have a really great GP there! Pity Social Services take there time. I phoned them a couple of weeks ago re an assessment, havent heard back yet. The thing that amazes me is that people dont phone them unless they need something now, and then they have to wait a few weeks! Seems a bit backwards.
I really hope you get some help very soon Em, seems like you are having a bit of a time with it all now and I am sorry to hear that.
Wish I could help but sending you a ((hug)) instead xx
thanks everyone… yes it’s been a shock to find out too that the services I need are just not avail for weeks…and I want to remain independent in my own home…I live alone and value my independence ! legs still don’t feel right…like lead…had another. small leek and still waiting for that urgent urology referral had dates for MRI of shoulder 30 July and the thorasic and lumbar spine 1st aug but they have given me times outside patient transport!! great …may have to get taxi and claim back from hosp as if I cancel then it will bea more weeks to wait!! grrrrr!!! x
Well you have certainly got alot going on there at the moment but nothing thats helping right now when you need it.
Our local council through shopmobility do loans of self propelling wheelchairs, do you have a similar option where you are just to tide you over?
With all you are contending with I take my hat off to you remaining as independant as you are. I do have to say social services due to cuts over so many years are totally crisis management focussed,rather than seeing the benefit of helping sooner rather than later.
Could you use ring+ride for the hosp visits,or do the hospital have a bank of volunteer drivers that could help you?
How are the eyes nowadays?
I really hope you get sorted asap.
hey pip thanks for your message…how’s you? I know it’s pretty pants at minute. will try shop mobility and see on that. MS society may be able to help re a grant for those motorised wheels. eyes improving slowly still borderline for driving and have new contact lenses but struggling to get them in and take them out…re arm/ shoulder/ hands…so once I can do that then if I can read a number plate at required distance then I can try and drive but may struggle with this re arm so a friend suggested a steering wheel knob. so worth a go on that. ring and rise won’t do hospital appt but will do for visits to see a patient and no volunteer drivers either …lol where is my teleporter when I need one as in star trek!! lol it’s all go yes and ,it’s of uncertainty on many levels…but am staying strong although have had some days where I just feel its all too much…but have to ensure things are moving forward. …like a terrier with a ball. lol em