suen 01/05/18
Last reply 2 months ago
Awaiting Diagnosis

Hi

I am a newbie to the MS world.

I was diagnosed with a stroke in December 2017 then in March 2018 was advised that the lesions in my white matter had grown and were angled in such a way as to lead the stroke doctor to say they thought I had MS. I also have a “black hole” which is why they thought I had a stroke.

I have had another MRI with dye contrast today and wondered how long will I now have to wait for a diagnosis.

I have been referred to a neurologist and saw him in hospital last time I was admitted.

I have not been able to drive since December 2017 and now have mobility and speech issues along with my vision problems which are now controlled with a prism.

So three questions:-

How long should I expect to wait for a diagnosis.

Will I be able to drive again

What treatment will I be offered and when

Sorry for all the questions I am feeling a bit annoyed with waiting so long already.

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stumbler
2 months ago

Hi @suen and welcome. I am sorry that you have yet to receive a response to this post, that must be unsettling for a newbie.

Anyway, the journey to a formal diagnosis can take years, as some members will verify. So, you’re not doing too bad so far. But, the NHS should/could do better.

The results of your latest MRI should have reached your Neuro within a couple of weeks. At the end of this period, contact your Neuro’s secretary and confirm that the results have been received/seen and when it’s likely you will have an appointment. Do mention that you have visual problems and that it’s urgent.

As to driving again, it does depend on the problems you have, which may affect your ability to drive. You do have to advise the DVLA if you have a diagnosis of MS and they will check with your GP and Neuro whether you are safe to drive. I’m sure everyone will do their best to help you retain your licence.

Dependent on your problems, there may be methods to retain your driving safety. Prisms are helping your diplopia, I assume it’s diplopia. These prisms should be reduced in strength every few weeks to “train” your vision back into place.

Treatments can be considered once formally diagnosed. They fall into two main categories:-

Disease Modifying Therapies (DMTs) – drugs to address your MS, to try and reduce the frequency and severity of future relapses ; and
Symptom Management – drugs to help you live with the symptoms of MS.

These can be discussed at your next appointment, although the task may be delegated to your MS Nurse. Your MS Nurse is a specialist Nurse, who only deals with MS patients. They will be your first point of contact for all things MS. They act as a point of liaison between you, your Neuro and GP.

Sorry for the long response. 😉


suen
2 months ago

Thank you for the reply, I guess i will have to be patient although it’s easier said than done when your whole life has imploded.

I have been in hospital three times since November last year and have had countless scans etc but was only just referred to a neurologist before that I had a stroke consultant and optometrist.

I am trying to live off SSP and my husbands wage and I still have two children to support and a mortgage to pay. And I have a PIP assessment next week to look forward to.

My employers have told me they are going to start capability proceedings and I need to drive to do my work.

Anyway enough of the pity party I guess everyone has a tough time when they are first diagnosed.

It’s all a minefield and there is not much support if you don’t yet have the disability label.

It’s good to have found this forum though so I can speak to people who have been through it all before.

I will also follow your advice mentioned.


stumbler
2 months ago

@suen. you only feel that your life has imploded. You’ve had an unexpected shock and you’re trying to come to terms with it. This takes time but you will regain your sense of perspective.

Anyway, the body and, more importantly, your brain are complex pieces of kit. Our Doctors aren’t magicians, they can only go on what they can physically see and the results of tests/scans. Diagnosis is a case of eliminating the probables, then investigating the possibles.

Be wary of the PIP assessment. The whole process is loaded against you, but you can still navigate your way through it. Don’t portray a positive attitude. Consider every question as if you’re having the worst possible day.

You need to let your Employers know that the driving problem is temporary. Let them know it is suspected MS. This should give you some protection under the Equalities Act 2010, which imposes a duty of making “reasonable adjustments”, to allow you to continue your employment. You might also consider consulting the Citizens Advice Bureau regarding this. And your Union, if you have one.

You’re right, it is a minefield. There’s a lot of us, who have navigated it, so feel free to pose any questions you may have.


suen
2 months ago

Thanks @stumbler (must read how to tag someone properly) whoops should have done it straight away as I’m going to forget now until next time I need to do it😬.

My work are really being very arsey but very cleverly staying just within the law mostly. I have a senior position and am the only one qualified in the company to do my job so they’ve just lost any goodwill they had with regards to answering their questions whilst I’m off sick. That’s probably why I’m in such a bad mood as they have made this whole process so
Much harder.

I guess I need to give the doctors a bit of a break but it’s not in my nature to be too patient so I’ll be chasing them when the two weeks are up!

I know things will settle down but it’s a bleak place at the moment so having a place to speak to others going through it is invaluable as research alone doesn’t cut it and I do appreciate the replies.

I shall be wary of the PIP Assessment and have already downloaded the guidance from the MS Society so know that the assessors don’t really understand transient symptoms.

Thanks

Sue


suen
2 months ago

Have been reading some posts on here a bit and realise I’ve gotten into a bit of a depression.

I have just got my neurology appointment through but still off work.

I’m going to take stock, wait for my neurology appointment and then sort out work when I know what’s what.

If I had to offer advice to anyone else in my position it would be to not rush into any decisions particularly not when you are in a flare up.


potter
2 months ago

You need to find something to keep your mind occupied, you will find stress will make you worse. I know it is almost impossible to calm down and relax at this point, that is why you need to find something else to think about. Potter

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