Waiting for MRI - anxious to progress and feel like my life is on hold

I saw a neurologist for an initial appointment two weeks ago and have just got my MRI date through for June.

She thinks I’m showing sufficient signs of MS to have an MRI to rule it out, or otherwise.

It’s 2 months to the MRI and based upon posts here it will likely be another 2 months after that the results are shared. I’m already quite a nervous person and all this waiting is making me anxious.

I’ve had a few symptoms (but not the more classical ones) for several years, but honestly I’m not really too sure I have MS, but the concern is there and I’m sure many of you are also in this waiting period or have experienced it pre-diagnosis.

I just want to get on with my life without this cloud and make some progress with treating my symptoms, whatever the cause.

Sorry for my ramblings, I immediately feel better having put my thoughts down on paper when it’s hard to share them with people I know.

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I’ve received a letter cancelling the June scan and setting a new appointment for August.

I’d just accepted mentally the June date (in a couple of weeks I could say “next month”), but August seems too far.

I get that suspected MS isn’t urgent in the same way as other medical issues but it’s very frustrating to be left in the lurch so long.

I’ve started looking into going private but private healthcare is not something I’m familiar with and I definitely couldn’t afford loads of private appointments and scans so I’m a bit conflicted.

Being in limbo is mentally exhausting and my symptoms are so borderline as to whether I’m fit to work or not that I’m really struggling with whether to go off sick (which would no doubt be long term) when there’s no chance of any diagnosis for months, and a chance that the MRI will be clear and put me back to square one in the diagnosis queue.

This is so hard with things being out of my control, even though I’m not too nervous about potentially confirming MS. My personality likes to get thinks done ASAP so next steps can be decided which is so not how the NHS works.

Unfortunately it can take a long time to get a diagnosis for MS as you need to meet the Mcdonald criteria and all other possible causes need to be ruled out.

My symptoms at that stage were chronic fatigue , brain fog, losing consciousness on several occasions, falling , numbness and pins and needles in my hands and feet.
I had numerous trips to A&E , and blood tests with nothing found.

What symptoms do you have ?

My own experience took 3 years to reach a formal diagnosis despite multiple lesions found in my brain and c spine 3 years ago.

I did go private for my first consultation and MRI as my GP was dismissive and put all my symptoms down to depression and anxiety.

I think it cost around £200 for the consultation and £450 for the MRI.
Luckily I had BUPA through work.

After my first MRI I was transferred to my Neurologist NHS list and given access to an MS nurse.

My diagnosis at that stage was " probable MS".

I do understand being in limbo is very difficult. I do hope you get answers and the help you need as soon as possible.
Take care and let us know how you get on.

Thank you for the reply.

The main symptoms I have (in terms of bothersomeness) would relate to my eyes - it feels as though my vision is constantly changing and “wrong” and no number of optician’s appointments changed this over a two year period.

Possibly resulting from the eye problems, my balance and coordination is fairly terrible and I’ve had mild vertigo for a long period.

I’ve had a tightness in one half of my head since around the time that the eye problems started, not really as strong as a pain but unsettling anyway.

Onto the more traditional symptoms I’ve got significant one sided weakness with some occasional odd sensations on the same side. These don’t really impact me day to day, but probably tip the balance towards MS being suspected.

I should appreciate that my journey to be taken seriously by a GP was quite short compared to many as they listened and referred to neuro quickly, but each referral/appointment taking months is tiresome and I know I’m low priority in the grand scheme.

Without a diagnosis/prognosis (or not!) I can’t even think about planning for the future and there’s a significant risk I’ll end up making rash decisions I regret (in terms of my job etc, nothing to harm myself).

With symptoms being invisible, I feel like I’m being seen to be off sick a lot and not as good as I should be at my job, which is a self-perpetuating problem too.

I think it’s best if you can, not to make any rash decisions about work.

I did go off sick for a couple of months then went back but was unable to cope any longer physically and mentally in a job I had done for years.

I’m now still technically employed but not working and paid a percentage of my salary by my employers Insurers income protection policy .

I had to produce a lot of medical evidence which is reviewed annually.

Never walk away from your job , let them finish you if it finally comes to that.

Normally if you go off sick you will be paid your full salary for 6mths and then half pay for six months.

During that time you will have contact with HR and Occupational Health who should assist you to make a phased return to work.

If you are diagnosed with a disability your employer will have to make reasonable adjustments to help you do your job. That could be regular breaks , new equipment, reducing your hours , working from home etc.

There are a lot of people here who understand what you’re going through and if you have any questions or concerns just ask and someone will try to help.

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I’m desperately trying not to quit my job and will just go off sick if I absolutely need to. The problem with that is that my symptoms have been going on well over a year and not improving so it feels like if I went off sick I’d face an uphill challenge going back without significant adjustments. I’ve gave up hope that I’ll just “get better”.

Unfortunately I would only get statutory sick pay if I was off sick, so finances would be a concern if I went off and long term it wouldn’t be sustainable.

If I did get a diagnosis of MS, I know a lot of legal protections would kick in so I’m trying to hold on until there’s an indication one way or another. Now isn’t the time to just overreact with big life decisions.

It’s awful, but at the same time reassuring, that others have experienced similar issues. It’s so hard to decide where the line is to say I’m too ill to work, it just varies day by day and is probably as linked to my mental state as my physical state.

Hi, my first post here as a lurker for the past few says after an MRI last week and my GP subsequently referring me to a neurologist after telling me my scan showed signs of MS.

I’m wondering all the same questions as you about work, having to be tactical while living with symptoms. I’ve actually put in a flexible working request to ask for 4 days at work and one day working from home. That might change of course and I would use the reasonable adjustments approach rather than another flexible working request.

It’s a watch and wait for me right now until I get any lead on a neurologist appointment.

Sorry to ramble on your thread, but it echoed with me. Some great thoughts and insights. Thank you.