Last reply 1 week ago
Feel bad for moaning but hurry up!!!

I’d dealt with hospitals mainly as a visitor until my diagnosis last month. I feel bad for complaining that results aren’t being communicated back to me so that we can move on with my next steps. I know our NHS is under a lot of stress and unfortunately so am I!

I’ve been told that if my results came back clear then I’d be fine to choose a DMT. This fits fine with me as I’m keen to zap things as early as we can and I’ve been doing my reading so that I choose what’s right for me.
But the team have had my results for a week now and still haven’t contacted me to let me know the results and what it means for me going forward. Hopefully that’s a good sign, right?
It’s just all a bit vague and the waiting is killing me because I just want to stay organised and prevent further relapses. I really feel bad for moaning but all I see and hear is how important it is to be prompt and catch things early and treat things ASAP, and the hospital are the ones that have the power to move me along to treatment stages and are just sitting with the results?!

So sorry for ranting but it’s really getting in my nerves! Every time I phone I get asked to phone back at a time when a more capable person will be on shift and I still get no further.

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highlander
2 weeks ago

@keepsmyelin99
I know what you’re saying, believe me.
At least you’re in the system so to speak. Some people wait ages just to get this far.
It’s the way the way things are going to be I’m afraid….
Hurry up and wait.
To be honest a couple of weeks isn’t going to make that much difference.
Best thing to do is go with the flow to a point.
Stress really really really doesn’t help fix anything it just makes things worse.
Easier said than done I know.
Just keep smiling 😀


bee1
2 weeks ago

Hi @keepsmyelin99. I understand your frustration but there is nothing you can do which means you need to let go. Stress really does affect things. I wish you all the very best. 😘


keepsmyelin99
2 weeks ago

Thanks @highlander and @bee1 🥰
I’ve phoned (again!) and managed to get the receptionist to send my consultant an email. Hopefully I hear back some point this week.

Not stressing is really difficult, especially when people keep asking me how things are going. I’m meditating and trying to seize every opportunity to laugh which is helpful, hopefully that carries me through all the back and forth and waiting that is yet to come!


bee1
2 weeks ago

🤞hope you hear soon, with good news. I find meditation and reiki help to reduce stress, along with plenty of rest and sleep. Let me know how you get on. 💞


cameron
2 weeks ago

If nothing happens I would contact the PALS department at the hospital asking if they can clarify why the delay has happened and for their advice on how to move it on.


keepsmyelin99
2 weeks ago

Thanks @bee1 and @cameron ☺️
Expecting a call today but won’t hesitate to chase things up if I don’t hear anything!
Been finding it very therapeutic to focus on uni work so the stress is less of an issue now, thankfully!


watsoncraig
2 weeks ago

Hospitals argh. Went for an MRI and a week later still nothing, so I called them up and was told that they had to wait for Radiology to post the results online before they could see them. My report was you are about 40 meters apart! I will come get them and bring them to you! Nope, procedures be as procedures are. My wife is also NHS and finds this very frustrating.


sfrox
1 week ago

Good luck @keepsmyelin99. THere is a lot of hurry up and wait in the medical system. I occupied my time by reading up on the condition, studying what I might be going on, and starting a healthier regimen (for me it was morning smoothies, going to bed earlier, and tweaking sugar). I was frustrated too but realized I was the only person in control of my health anyway. Unfortunately we don’t move to the front of any lines with MS.


somehills
1 week ago

I love the NHS with a passion but I have to agree with @watsoncraig…argh. It is my wife not me who is the MS sufferer and she gets stressed waiting for results much more than me (and obviously it is her whose conditions is affected by the stress) so it is just very frustrating. You are already doing good things by trying to focus your attention elsewhere. Good luck


keepsmyelin99
1 week ago

Appreciate the support folks ☺️
It is so frustrating @watsoncraig like you say – I’ve still had no word and I’m just about to leave a message for my nurse. I’ve given them time to get in touch but I just can’t keep taking the risk of going much longer without treatment. I made it very clear to everyone from the start that I knew which DMT I wanted to start and I wanted to get on it ASAP. Obviously the worry is the main problem here because I know the uncertainty is something that just comes with the MS and there’s not really a way to remedy that…

In the meantime I’ve been proactive on a lot of lifestyle changes like you said @sfrox – taking control where I can! Cutting things from my diet, adjusting my exercise, researching tonnes (I mean TONNES of info, I could maybe do a 2nd degree in medicine 😂)

Yeah I agree @somehills , the waiting is the most stressful part. I get that waiting is necessary and there’s so much for everyone to take care of, but the patients are always gonna be thinking “what if things are happening whilst I’m waiting? What then?”


highlander
1 week ago

@keepsmyelin99
My MRI was done 8th September
Seen neurologist 2 weeks ago.
He hasn’t seen anything….
And he doesn’t seem bothered, in his opinion MS is just MS.
All DMTs are basically the same.
So once they come in I’m transferring my cute shiny backside to an MS specialist at another hospital…..if she’ll see me.
Here’s hoping we both get an answer soon 😀


nutshell88
1 week ago

i wonder why neurology issues are late always
last time ive seen neurologist was oct 2018
will see them again 2020
absolute ridiculous


keepsmyelin99
1 week ago

That’s absolutely ridiculous @highlander ! Where are you just now if you don’t mind me asking? Do you know where you’d be looking to transfer to? I really hope something gets done soon.
I know @nutshell88 , I think that – although an interest in research is necessary to making progress in treatments and possible cures – too many neurologists are only in their job for the glory that comes with the research and findings, and NOT for the moral reward of helping someone to keep living their life with MS.

All this reading that I’ve been doing about the disease, related diseases, symptoms, possible causes, treatments, trials etc. is leading me into some really interesting theories. I’m hoping my interest in the research side of things might appeal to my neurologist (when he finally decided to get in touch with my results!).

I keep having to phrase my concerns in emotional voicemail messages to the MS nurse just to ensure I get a reply, which is really annoying. I do feel bad for calling and saying “I’m really sad and worried and stressed because…”, but then again, I AM sad and worried and stressed! And if phrasing it like that is going to successfully get me what I need, then I’m just going to have to keep doing it!


nutshell88
1 week ago

you’re absolutely right
thats my neuro so busy with her patients


keepsmyelin99
1 week ago

UPDATE

Just had a call back from MS Nurse who says that the results aren’t actually in yet. So I’ve been chasing up something that doesn’t even exist! Last week I was told that they were in and just couldn’t be released over the phone. She was so lovely and apologetic that I had been given false information, and she said that she’s getting the neurologist to phone the lab directly as soon as he can so that I can know what’s what and get started on a treatment. What a ride…! 🙄

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