Best of luck going forward, as has already been said, take your time, find your groove and take things one day at a time. Small gains.
If you try and get too much done in a short period of time, you could be setting yourself up for disappointment.
Keep posting and updating as well, it may be your blog, but loads of us have been hanging about these forums for far too long and genuinely like to hear about stuff.
The treatment that's available these days is a ray of light in an otherwise dark place.
I've known two people with MS who, once the diagnosis and medication was sorted, led / lead great lives. Not saying it's easy for them at all,but the difference between pre and post treatment is night and day.
Yay for you! A little tip that might help in the battle for any future treatment. Do an SAR (subject access request, you'll be able to find the link on the hospital website) and specifically request *all* of the notes & radiology (images and records) that the hospital that treated you hold. You'll need to do this for each individual trust if it was different hospitals. They have to provide you with this within 30 days (my last part time job before completely retiring was Corporate Governance in the NHS) of acknowledging your request, it'll get sent in PDF format, and a link to the radiology site where you can download the images.
It's handy have these records for any future conversations, you'll see exactly what the specialists have diagnosed/written, their names/dates any recommendations for drugs and so on rather than trying to have to dredge things up from memory. NB, this is hospitals only, GPs are a completely different system.
Mussels wrote: Sat Sep 24, 2022 7:59 am
Welcome back Screwdriver, I'm glad to hear something is working for you
What you have taken sounds similar to the effects of steroids, be careful if that also means you'll get a similar crash.
It's good to see you're back on here although not with the news anyone wants to hear. Just for info - methylprednisolone IS a steroid, just like all prednisolone derivatives, so the above is relevant.
And I see you typed your opening post at 2am, when most of us are safely tucked up in bed, preparing for whatever tomorrow brings. You need to take care of the new Screwd, and that means sleep is necessary, not just a good idea.
Best wishes to you Screwd, I hope the treatment, if it cannot cure the problem, can give some long-lasting relief. Please also remember that, whilst we may only be virtual friends, we ARE your friends. Come here and vent, tell us how you are feeling, we do actually care.
McSatan wrote: Sat Sep 24, 2022 3:22 pm
Yay for you! A little tip that might help in the battle for any future treatment. Do an SAR (subject access request, you'll be able to find the link on the hospital website) and specifically request *all* of the notes & radiology (images and records) that the hospital that treated you hold. You'll need to do this for each individual trust if it was different hospitals. They have to provide you with this within 30 days (my last part time job before completely retiring was Corporate Governance in the NHS) of acknowledging your request, it'll get sent in PDF format, and a link to the radiology site where you can download the images.
It's handy have these records for any future conversations, you'll see exactly what the specialists have diagnosed/written, their names/dates any recommendations for drugs and so on rather than trying to have to dredge things up from memory. NB, this is hospitals only, GPs are a completely different system.
Keep feeling on top of the world!
Damn that sounds like a great idea. I have tried something similar before but got nowhere. There have been multiple occasions over the years where my scans have been lost or the consultant so busy and so much time passes between appointments, cancellations, delays, they need another scan and the cycle begins again. That happened many times, over many years...
This is an example of the sort of thing you should look for on the trust/hospital website. It's free.
Hey Steve, just seen this, sorry to hear your diagnosis but at least now you know what you are up against.
Mrs GP has Multiple Sclerosis, she was diagnosed about 4 years ago. After the initial MRI and diagnosis, she was put under the care of the Neurologist and the neurology nursing team.
Her GP is only ever in copy for what's going on and the local surgery used just for taking bloods etc. Everything else is organised by the Nursing teams and neurologist. If she is having a bad time, she goes straight to them. I'm sure there are regional variances like with everything in the NHS, but I'd be making best friends of the neurology dept.
The Meds are all about preventing further lesions on the brain. I was amazed that from the half dozen drugs on offer to her, non of them had been on the market more than 30 months - shows how fast research is progressing. The side effects pose as many problems as the MS itself but at least with Mrs GP she has no more lesions than from the first attack she had.
Only just seen this (tend to stay mainly on the bike stuff). Glad you are in a better place at the moment it sounds like it's done you wonders. Good luck with everything I'd recommend staying away from the news, I keep getting sucked into it but I don't think it does me any good it's a never ending doom scroll.
Thanks. I may question you on this in the future if that's ok.
I am waiting for the side effects to subside and for the treatment to settle into my new normals. Still a bit of a rollercoaster but less extreme emotionally.
Anytime
Side effects are just as much, if not more of a challenge than the condition itself. the Meds merely hold back progression of the disease but sometimes at a big cost. Mrs GP is swapping Meds next month, the one she's going on means she needs to be admitted onto a ward for the day and closely monitored as initial side affects can literally kill you - highly unlkiely but it does show how serious some of these meds are.
I'm not an expert and all this is just from our experience. Mrs GP does go on a couple of M S forums but recommends avoiding international ones as they tend to get swamped with mad americans!
