Last reply 3 weeks ago
Denial? Confused!

Hi everyone,
Looking for some reassurance if thats possible! I was diagnosed just recently with MS by a neuro who referred me to an MS consaultant. Really nice chap but said that its difficult to get a clinically definitive diagnosis at this stage? Confused me a little so i asked was there a chance this is not MS – he asnswered ‘No its definately MS but untill your next episode or positive test (im having an eye/brain response test soon) we cant formally say what type it is’. So my husnamd asked if it classes as a CIS, and the Dr said not quite as i have had previous symptoms but the 2 areas of inflamtion on my spine may have happened at the same time and so look like only 1 attack. (CFS was positive for O bands) He then sent me to meet the MS nurse who was lovely and gave me lots of info and treated me as though I have MS but Dr said he couldnt provide me with written confirmation as its not clinically definitive. So now i feel very confused as to whether or not I have MS. they say yes to me but it feels like they dont want to commit in writing? My GP is under the impression that i have it since my neuro wrote to him and included the words ‘discussed the diaognosis of MS’ – although my insurance company feels that wording is ambiguous and not a diagnosis in itself.
What do you guys think? Am i in denial?
Sorry for rambling post!

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gazmataz
3 weeks ago

No it sounds like to me anyway that you have ms but they are not ready to say what type. There are three types R.R.P.P. Secondary and primary


gazmataz
3 weeks ago

Not sure what the p.p were for.


stumbler
3 weeks ago

Hi @beky and welcome to our exclusive club. You’re well justified in having a ramble, given the circumstances.

MS is a notoriously difficult condition to diagnose, hence your referral to an MS Specialist. They will need to ensure that the available evidence satisfies the McDonald criteria (https://www.mstrust.org.uk/a-z/mcdonald-criteria), to give you a formal diagnosis.

But, it looks like the original Consultant is hedging his bets.

So, you find yourself in what we call, “limboland”, whilst you wait for this further referral.

You now need to sit down and take a deep breath, as it’s important for you to be able to think all this through rationally. Not a lot will happen whilst you wait for the Specialist.

In the meantime, live healthily, eat healthily and try not to stress about the situation, Stress is a major protagonist of MS.

What kind of insurance is it that finds the situation ambiguous? It wouldn’t be ambiguous if you were looking to buy insurance………….. 😕


grandma
3 weeks ago

@gazmataz the pp is primary progressive, the rr stands on its own its relapsing remitting, you have primary on its own at the end of your list and if usually put with progressive to make primary progressive. Hope this clears things up for you.👍


beky
3 weeks ago

Thanks very much for your replies @gazmataz and @stumbler

The insurance I have covers critical illnesses – MS being one of them but without the words ‘definitive’ they are not obliged to pay out. The trouble being that we had planned to remortgage this year to make things a little easier (im self employed and have had lots of time off recently with my symptoms) but of course we can not remortgage without cover in place and although the insurance company wont pay out, they also wont cover me anymore! Its been stressful to say the least!
I guess its a waiting game and im not being patient enough!


stumbler
3 weeks ago

@beky , the “writing does appear to be on the wall” for a diagnosis of MS, so a pay-out on the Critical Illness cover will just be a matter of time, whilst the i’s are dotted and the t’s are crossed. I should imagine that a pay-out would make a major change to your financial planning, so you should factor this in.

I know the being patient and being female do not live comfortably together, but try and do your best. 😉


devind
3 weeks ago

Hi @beky, I went through a similar issue with my diagnosis so I can commiserate about how hard it is to be stuck in the “you definitely have MS but maybe you don’t” zone. I was diagnosed after my first flare up while in the US but had to wait to have a second flare up to be diagnosed in the UK, which ended up taking about a year.

It’s a frustrating waiting game but at least for me it took some of the sting out of my second flare up knowing it needed to happen for me to be able to move forward with treatment.

Good luck!


beky
3 weeks ago

@stumbler have you been talking to my husband 😆
Thanks for your response


beky
3 weeks ago

Thanks for your reply @devind
Yes its a strange place to be almost ‘hoping’ for another flare up but praying it will be mild enough to not cause too many issues but bad enough to show on a scan!
Its a helpless feeling knowing you have a serious disease that coupd relapse at any momemt but nothing preventative is being done about it at present. I feel like a time bomb waiting to explode!
I think thats what im struggling with – just trying to put it out of my mind at the moment but then other symptoms appear and remind me!


maureena
3 weeks ago

Hi @becky, hope you are well. I can totally understand how you feel and your frustration as I’m in exactly the same situation . I have been diagnosed cis for 3 years and although I’ve had new symptoms I’ve had no more new lesions so no definate diagnosis. It frustrates me that Neuro is waiting on a ‘big’ enough relapse to comit to a diagnosis. I have over 20 brain lesions, 1 spinal and positive lumbur puncture. I am also impatient waiting on critical illness cover to be able to be paid and enable me to reduce work hours. Welcome to limboland. Keep well x


maureena
3 weeks ago

@becky ive added friend request if you ever feel in need of a chat


beky
3 weeks ago

Hi @maureena
Thanks for your reply.
How awful, i thought you would meet the mcdonald criterea if you had lesions in different places? I only 3 spinal lesions but as they are all in the same place its hard to tell if they are all part of the same attack. Do you mind me asking what are your new symptoms?


dominics
3 weeks ago

You don’t sound in denial. Such a big thing is probabl;y worth a second opinion. Your GP is the person to ask to do the referral, and they ought to be able to speed it up in the light of the clinical concerns.

You have the right to ask for a Neurologist of your choosing and you can also request that the GP is explicit that you need to be seen as a priority so that you and the clinical team can make timely and well-informed treatment decisions.

If you can afford a private consultation (I think it will be between £250-450, depending on who and where) and you consider it to be money well spent for peace of mind, then that is another option. You’ll be able to take all of your NHS diagnostics to date with you. That is a thought.

Otherwise you may be in the invdious position of having to wait for ‘smoething’ to happen. That is no fun at all. Essentially: in the NHS the squeaky (but smiling and polite) wheel gets the oil. Polite persistence to your GP, the neuro team (Usually, the MS Nurses are brilliant) etc may help avoid the feeling of slipping between the cracks.

Bon chance!


maureena
3 weeks ago

I have had numbness in arm which I didn’t have with first relapse and recently had tingling and stabbing on face and lips with scalp sensitivity. I’ve over the past few years had leg weakness but had that with first relapse as well as ON. I thought with new criteria id get a def diagnosis but my Neuro not using updated criteria. It is very frustrating and I hope your diagnosis is quicker without any life changing relapse. My spinal lesion was only found last year but can’t date it as was first spinal mri


beky
3 weeks ago

Oh that must be so frustrating for you @maureena
I cant understand why that isnt enough for definitive diagnosis
Although my initial symptoms have settled compared to how they were almost a year ago, my arms and legs just feel like lead! I cant seem to do anything for very long without my body feeling like iv just done a huge work out! Im getting twitching in my muscles that lasts for days at a time, i mean like really powerful twitching that looks like something is inside trying to break out! And at night i feel like my legs are vibrating! its frustrating not being able to say for sure if MS is the cause of it


stu09
3 weeks ago

Hi, I had the same issue my first doctor said that I didn’t have Ms ,I requested a print out from my gp surgery of what had been sent, when doing the google test everything pointed to Ms. I booked an appointment with my gp and she agreed with what I find. I then had a different doctor who looked through my notes an my first meeting with him, he confirmed I had Ms. I don’t think some doctors won’t to comitt.


meg_kingston
3 weeks ago

Some doctors are very old-fashioned. When I first got symptoms in the 1990s, it took me years to get a diagnosis, largely because they didn’t see any point in telling you that you had something they couldn’t treat! Nowadays there are DMDs and symptom checkers on the internet, but some doctors haven’t noticed. If you’ve got one of the Victorian ones, get a new doctor. You’ve got enough to worry about without him making it worse. The right doctor will work with you and make life as easy as it can be, and this can make a huge difference. 🙂

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