After being abandoned by neurologist and ms nurse years ago, I finally saw one in December as I’m deteriorating rapidly. As predicted they wanted an MRI to see if theres’ new active lesions before giving me DMDs. But I couldn’t handle the scan! I can’t lay on my back it’s like laying on rocks under my coccyx! I haven’t laid on my back for 15 years and only sleep on my side or sitting up.
So I’m damned! No scan = no drugs. Just an inexorable decline. I’m 62 and ready for the knackers yard! I just give up, my overall health is declining some may be because of my ms but can’t stop the decline.
I’m certain that my body is giving up and I get no support, my so called carer needs a carer, I think adult social care have shelved me, community neurological rehabilitation services are impotent, my GPs only good for ordering tests, and referrals.
What the heck am I supposed to do?
Reminds me of a song @Dollydaydream . You might remember the one when a certain new PM got voted in back in the late 90’s..
Things can only get better ! Well, they certainly couldn’t get any worse for you. You have to keep on at them. Don’t let them forget about you. Ring your neurologists secretary, you must have had one. Ring your ms nurse, you must have had one of those too at one point. You do have to be quite firm with those as well as being polite too. Well, as polite as you can be under the circumstances that you find yourself in. Contact your MP. They might be able to get things moving for you. It’s what they’re there for. You don’t even have to have voted for them as they’re supposed to represent everyone in their constituency. Wishing you all the best that this coming year you will not just get the treatment you deserve but, the kindness and empathy you need from those who are supposed to care for you too.
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Ok so this is where I am now…. I’ve got an appointment for an MRI and will be taking a sedative and some pain medication before so let’s hope that I’m able to complete this scan. If not I’ve been researching and there is a MRI scanner that can scan someone seated! However These are not available on the NHS, and are not common. I’ve been told to look into patient choices but I’m not hopeful about this so I’m pinning my hopes on sedation.
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Hope it went well for you @Dollydaydream
If you haven’t had your scan just yet, then I wish you all the best that the sedation helped.
I am thinking that the hospital must be used to dealing with people with various back problems and wondering shouldn’t they have offered you something like a coccyx cushion? Surely they must have something to assist people with your coccyx damage and similar of worse back and pelvic problems?
Where I am now, my scan was supposed to be tomorrow but I caught a virus a couple of weeks ago I think it was Covid. (My Covid test were out of date so although they where negative, I can’t trust them) I caught it off my partner who as I have explained on this forum before has a life limiting cancer (not curable with chemotherapy or radiotherapy and probably not even curable with a stem cell transplant) so immunocompromised. Both of us are still hacking our guts up. This cough is making sleeping almost impossible. So lying still in an MRI scanner is impossible.
As a result, I’ve had to cancel the scan and unfortunately because I can’t predict when this cough is likely to improve or at least improve enough for me to lie still I can’t actually book another scan because I can’t book a scan the hospital want me to get another referral from neurology.
On top of which I’ve had a letter suspending my appointment for my follow-up with neurology that was scheduled for September this year suspended until April of next. It’s just going from bad to worse.
Sorry to hear all that. When you do get an MRI scan do tell the MRI team about your coccyx and I’m sure that they will be able to provide some back/pelvic support to deal with the pain.
sorry about your partner. My wife has not long completed what was more or less a gruelling year of surgery, chemotherapy and immunotherapy and then 5 weeks of radiotherapy. The next thing is a scan to see if any cancer remains.
Not that we have felt much like going out but both of us generally avoid places where we might catch coughs , Covid etc. and also carry hand sanitizers. We keep a stock of Covid tests - it’s a good idea to do so for when you get your appointments and scans ( and avoid going anywhere that you might catch coughs and sneezes etc!)
Hello Hank, what a lousy time your missus has had. I wish her well and hope it’s great news! Any cancer is a beast and we only hear the horror stories so I try these days to remember that many people beat it. My oh was told by the specialist that his was “complicated”
Going out… other than doctors appointments, hospital appointments and dental appointments I’ve not been anywhere for 2 years, he has been out but mostly outdoor activities and wears masks on buses etc. I can’t get free COVID tests anymore and have a few left that are now out of date, but my oh hasn’t ever used them. He caught COVID in 2021, refused to test, gave it to me and as I’d not been out for 3 weeks and tested positive I know where I caught it! He caught flu at the hospital November 24, gave it to me. And this virus he also probably caught at the hospital, whatever I catch always goes to my chest and last weeks, although I’m sure it will slowly get better.
I am so sorry to hear about your diagnosis. It is completely natural to feel overwhelmed and in shock right now. Please try to be kind to yourself while you process this news—modern treatments are very effective, and you aren’t alone in this. Take things one day at a time.