Hi all. I would really appreciate some advice on if I can and how to change my current MS Nurse.
I feel I'm not enjoying my appointments, I'm left very anxious before & after them and can't seem to 'gel' with my Nurse.
I've been considering it for a few years and unfortunately I feel the situation isn't improving.
I live in a rural area and have the choice between 3 hospitals (within a 1 hour drive) for an appointment but all with the same Nurse. I believe she is the only nurse for the Shropshire area. Any advice on how to change would be greatly appreciated.
It's been a mad few weeks!
I was referred to a London consultant when I expressed some doubt over PPMS as bowel issues (frequency & urgency) were completely resolved by steroids and I expressed interest in trials to my rehab consultant. I think my age threw a curve ball too on my original diagnosis and I was clueless about MS, I thought I had a trapped nerve!
So, I saw the consultant and we talked in more detail about my history (I saw a chiropodist 10 odd years ago about a numb big toe and can't keep a flip-flop on my right foot. I also see gastroenterology and have had loads of tests but they still can't diagnose), he agreed that a more aggressive approach was required and we discussed DMDs and he ordered new MRIs – The following week, I got a phonecall on a Sunday afternoon about a possible trial!
My MRI showed I have active lesions and resolved lesions – when I saw my MRIs, I just didn't recognise them... there's a lot of scarring. When I saw the consultant again, I checked if the offer of DMD's was still on the table if the trial doesn't go ahead for me and he said yes
So, I have RRMS after all. He booked me in again for a few months time and agreed he'd give me Tecfidera (tho he'd rather Tysabri) and I could cancel it if the trial went ahead.
The trial is for rapidly evolving MS, it’s a stemcell one but there's no chemo
I feel like there's at least some hope now and there’s some treatment available to me, really hoping for the trial but waiting biopsy results to rule out Crohns.
I hope that makes sense, I'm still a bit giddy!
Sonia xx
Hi all ,everyone is as good as can be, im still working at moment but its becoming really hard, i was a work last week but by friday night saturday morning i was in so much pain my whole body ached got so upset over this,as the day went on it got easier, till i went to bed saturday night sunday morning could hardly get out of bed, i got upset again, monday was better apart from normal aches same tuesday. Well back at work today and as i work in a bar yes i have a chair were i can sit. then when i sit my back goes it burns feels like its going to break its that painfull,then i get up to serve again, but im also walking with a limp as my left leg is so weak ive 2 more days to go, and realy hope i dont have the same repeat of last weekend, then i will decide wether to stay in work or not, im quite frightend of giving up work,my husband has said i dont have to tell him how i feel as he see's it day in day out how much pain im in.The only thing worrying is what could i claim? im going to have a word with my Dr, i just dont think the job is worth the pain susan xx
full of topics today aren't i? ok im on day 3 of improved walking. still nowhere near going out but im walking more normally than i have for months. my foot drop is a little better and my overall gait it better. going upstairs is easier too.
i can't go for much longer in terms of walking or standing but when i do move i feel a little more normal.
my counsellor come yesterday and noticed this too and i asked hubby last night and he's noticed it.
as always i try to analyze why, is it my exercises or is it that ms is finally giving me a break. im worried that this is just a bit of improvement before another decline.
nick, the first day i felt this, three days ago was following a day of not exercising my legs and i thought of you and the balancing act. maybe my body appreciated the break.I've also been wearing my boots this week rather than the pumps i usually wear so they may be helping as the physio put heel lifts into them.
i have a question now about my toes curl under.
they aren't yet rigid but have got more stiff. my surgeon said to try occupational therapy for splinting. i have purchased some splints just cheap things that seem to do nothing but make of uncomfortable so im hoping that i may get some that work.
he said if that didn't work i should ask for a referral to orthopaedics to discuss surgery.
has anyone had successful treatment for this problem!? sometimes they aren't too bad but other times i can hardly walk or stand with the pain. i think it would improve me a lot if i could get it sorted .
I just want to sound out on this one
I was diagnosed by a Dr that visits the hospital I was admitted to via A&E. He is mainly based at Walton I think and I imagine he maybe spreads his wings, I got this idea when i asked if I needed to contact him before my appt in 6 weeks.. his reply good luck. My question is, would you ask to see someone else that MS is more of an interest to. I apprecaite that MS and Parkinsons are both Neruological.
Whilst I saw this Dr 24 hrs after being admitted (luckily more than anything, as it was his day at the hospital) he knew straight away as he mentioned steriods may be required (I only realised this on reflection later whilst been given steriods that he probably knew or thought it was probable). Part of me feels rather blessed that I saw him when I did of course, someone else may not of picked this up.
It was when I had 2 MRI's some 3 days later that he viewed them remotely and then I was diagnosed... the news came via another Dr who was Cardio and I was started on the steriods immediatley. The downside was I was left for 4 days without seeing a Dr and getting worse every day until he came back the following week to speak to me. I just wonder then and now if I would be better in Walton and with someone who specialises with MS or MS being their particular interest. Part of me thinks that is where all the nurses are. I guess/hope I would not be on a Cardio ward, where I was things like Physio were not discussed until I was leaving when my mobility was at it's worse, part of me thinks if a qualified nurse had been looking after me I would not have been soooo worried and hunched up trying to protect myself... even worrying if I was able to sneeze. They even stopped me walking about incase I hurt myself due to lack of knowledge, but of course caring at the same time.
The scary bit for me was from being diagnoised and then being left with hardly any knowledge, I doubt that would happen in Walton, of course I have gone through the scary phase I guess and hopefully I will not be in that place mentally again.... but it just crosses my mind that I need to make some choices now before my first appointment since diagnosis and part of me thinks get myself to Walton under an MS Dr.
I want to make the right decision... who does not huh.
Part of me feels bad for asking as sooo many people here do not have a diagnoises but are trying to live without answers.. luckily for me I had no idea something was wrong...
Thanks for listening.
x
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