Last reply 2 weeks ago
Concerned about treatment delay?

Hi all,
I just wanted to get a second opinion from you guys about whether I should be concerned about the lack of urgency my neurologist is showing towards my treatment.
So my MS journey all started on 20th Feb, when out of nowhere I got double-vision. I had blood tests which showed I was dangerously low on Vitamin D, and eventually after a couple weeks my GP referred me for an MRI because my vision hadn’t gotten any better.
Fast-forward another 3 MRI’s and I was diagnosed with MS on 20th May. Apparently my 4 MRI’s (two on brain, two on spinal cord) show clear lesions and enough evidence for a concrete diagnosis. I went on a course of strong steroids for one week because apparently the inflammation in my brain and spinal cord was quite severe, but since then, everything has been very relaxed. I had a lumbar puncture on Tuesday, but have been told I may not get the results for about 8 weeks. And then after that my neurologist will schedule an appointment for me, and that could be another 1-2 months before I see him.
I’m not on any treatment at the moment, nor has any particular medication even been suggested for me.
But my concern is that it’s already been over 4 months since my optical neuritis, and I have symptoms of relapses tracing right back to my early teens (I’m 27 now, very nearly 28). Throughout my childhood/ teenage years I have so many examples of health “blips” which were never understood by my doctors but which now all fall under MS.
So, I’m really worried that this delay is just allowing more damage to continue to be done, whilst they’re faffing with appointments? Surely another 3-4 + months before I receive any treatment is another 3-4 + months of damage?

Should I relax about this? Or just try to push them a bit? I’m just so anxious and I already feel like I’m struggling with this diagnosis as it is, I can’t bare the thought of just being forgotten about and pushed to the bottom of their to-do lists whilst this just gets worse???
Feeling so down at the moment 😔

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stumbler
2 weeks ago

@lysadevon , it’s the NHS, cash-strapped and over-worked!

There’s not a rush for treatment, as adopting a Disease Modifying Therapy (DMT) is a big deal, which most patients have to go away and consider the inherent risks and how it may fit into their lifestyle. And that’s after they’re taken on board the diagnosis and got over the shock.

There are now twelve DMTs (I think), which all have different levels of efficacy, side-effects and risk profiles. It also depends whether your Neuro is old school and conservative, adopting first line DMTS then moving up if and when they’re ineffective or proactive, willing to offer the most powerful DMTs, adopting the “hit it hard, hit it fast” philosophy.

It would be wise to do your own research on DMTs, so that you can take an active part in any related discussions. Check out the “Treatments” link here for introductory and in-depth detail :-

https://support.mstrust.org.uk/shop

You can order hard copies free of charge, if required.


dominics
2 weeks ago

Hi. I will depart from my usual alignment with @stumbler to say that I absolutely think you are right to be proactive.

Everything seems to take forever, it usually feels like forever and especially when you are new to all this you want action.

Being an annoying pain in the arse is not at all British. However, asserting your interest and concern is not being a Pita. The Brits often conflate assertiveness with rudeness. You know if you are being rude and bloody minded. I doubt you are.

Over 26y I call until I get the person I require. I make an effort to get the nurses in my side. A good nurse is gold. Solid gold. If you can get them to go to bat for you then that is superb.

From the Neurology dept point of view you are one of the many many people that is being dealt with. Ensuring you are noticed and dealt with is up to you.

A line I have used multiple times I’d that, ‘I appreciate I am one of many, living with all my symptoms is becoming very difficult… Etc’

I’d also go and talk to my GP, ask them who, given no restrictions, they’d refer an MS patient to for a 2nd opinion. You are perfectly entitled to seek one and the GP ought to be your Go To for that.

Like @stumbler says, things go slowish, unlike say breaking your leg. Sometimes, in the case of the NHS, it is all Hurry Up And Wait.

If you want to speed things up, go private, go to London and see Ben Turner or similar.

Private fees are c. £3-350 a visit to a consultant. A private MRI is £1k+.

Private buys time, no better expertise.


bernadette
2 weeks ago

I’m all for getting a DMD asap. Politely persistent is the approach to take. If I knew 3 years ago what I know now (optic neuritis April 2016) I would have been far more vocal. And I would have also done what @dominics suggests and I would have paid for a private consultation.
Key I think is to find out who are the proactive consultants in London, and as @stumbler suggests that you research the drugs so that you can be clear what drug(s) you want.
Perhaps focus on those two areas instead of becoming worried and exasperated.
Although it is very soon after your diagnosis and it will take time to process all of that. I think you are right, you need a drug sooner rather than later (if that’s what you choose) My experience is that I spent too long faffing about and being like a rabbit in the headlights.
best of luck


dominics
2 weeks ago

@lysadevon – PM me for a list of the good proactive Londoners.

I was with two today. Super guys, both.

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