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Maybe the Drs have got it wrong?

Hi - I am new on here, I was diagnosed with Primary Progressive a few weeks ago after many years of symptoms that were all put down to other things or overlooked. My MRI’s eventually showed just a few brain lesions but multiple spinal ones and the Neurologist has made the above diagnosis. I’m guessing this is the case, but did others go into complete denial when given a diagnosis. Even though I walk with crutches and feel rubbish most of the time I still keep thinking that on my next visit to another Neurologist- an MS specialist - she will say ‘oh guess what, we were looking at the wrong scans, silly us, they belong to someone else and what you have is erm, let’s see psychological problems brought on by being a hypochondriac, and all that pain for all those years really has been all in your imagination’…

Hello

Welcome to the forum. The last place you ever thought you’d be welcomed to I’m sure. Or wanted a welcome to.

Yes, I’m pretty sure that your disbelief is fairly common. For some people it’s a relief to be diagnosed as at least then they can stop feeling like hypochondriacs and/or frauds. But for many, it’s unimaginable that they’ve been correctly diagnosed.

In my case, initially (22 years ago) I was told ‘you don’t have MS’, after MRI, LP and VEP tests. ‘Of course I don’t’, I replied, almost laughing at the idea. It took a few years, many relapses and eventual revisits to a neurologist to be diagnosed. I still thought, ‘no, not me, that’s not even possible’! Even while I knew that the diagnosis was correct.

This doesn’t mean I subsequently ‘accepted’ my diagnosis. I still haven’t. I maybe a full time wheelchair user, have significant bowel and bladder issues, memory problems are getting worse all the time, and my hands are desperate to form into claws, I still don’t accept it. I bloody hate MS. It sucks.

But it and me manage to live within the same useless body. Without too many disagreements and arguments.

Sue

Thanks Sssue - isn’t it mad but a real testimony to the human spirit that no matter what, we keep believing it will all be OK in the end. Seriously I have gone for years going to bed thinking ‘tomorrow the old me will be back, I just know it!’ I used to go to the gym, walk for miles, dance with abandon etc etc…for me one of the worst things and it is something I haven’t done yet (I’m waiting for the 3rd Dr to tell me it’s all a big mistake) and that is telling my grown up children and my Mum. My main emotion right now is that I want to apologise to them for being a let-down, being crippled,not being the person I was - especially my Mum she has just lost her husband and one of my 6 siblings is also very ill and she’s worried sick. Oh dear, I’ll stop now the tears are so close these days, thanks for the chat :slight_smile:

Don’t forget Juniper, it’s not your fault. There’s nothing you did wrong to bring this pile of excrement down on you.

Because they love you, your family will worry for you. Try not to completely minimise your fear and worry. It’s so common to say ‘I’m OK’, when asked. Let them help and support you, just as you do them. It’s OK not to be the strong and capable you, just for a while! And do be honest with your Mum, I’m sure she’d rather know how you really are, rather than see a facade of bravery. You can do ‘brave’ maybe next month.

Sue

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Hi, It seems to me that you’ve always been the supportive one, looking after everyone else. I think it’s time for you to let go of the reins and allow your family look after you for a change. Your children are grown up. Well, it’s time you treated then like adults and spoke to them as equals. The same goes for your Mum. Wouldn’t she like to know that her daughter needs a bit of mothering now? As for wanting to apologise for getting a nasty condition like MS, what else are you going to take the blame for? The weather? Donald Trump? Fewer chocolates in a box of Quality Street? While you’re working that out, finding this Forum is the best thing that’s happened for you. You’ll find plenty of people in the same boat as you. I’ve been diagnosed with PPMS as well so I can identify with your symptoms and how you might be feeling right now. Whatever is on your mind you’ll find someone who is willing to chat and share your burden. And in doing so aim to make it that little bit lighter for you. I’ve known Sue for a few years now and her advice is worth more than diamonds or 24 carat gold. Welcome to the Forum. Anthony

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An MS diagnosis is horrible and it is understandable to be in denial about it. From what I know, the diagnosis is tricky and is usually based on the “McDonald criteria”. There are not clear cut tests that give a definitive answer but rather a set of “indicators” which point to MS. However, the levels of research being done are enabling doctors to be more precise that they used to be and this means that some diagnoses are being revised. This link refers to a study in the US which highlighted a significant level of misdiagnosis: MS Wrongly Diagnosed in Almost 1 in 5 People at Two Specialty Centers in US, Study Finds Unfortunately, this did not mean that the patients were not sick - just that they had other MS-like conditions (which may, or may not, be good news!). Probably not the fault of the doctors but a sign of improving knowledge due to constant research being conducted. Just this week, I received the wonderful news that my sons diagnosis was being revised from MS to MOG Anti-body Disease. Apparently, the condition mimics MS and it is also a condition that tends to relapse. A new blood test has been developed in the last 2/3 years which can now identify the condition. Knowledge about it seems limited but the doctors seem to think that it is a lot better than MS. Leaving aside the diagnosis, I think you are being way too hard on yourself. You are sick and it is not your fault. I am sure that your family would want to know and to offer whatever support they can to help you through this difficult time as I am sure you did at times to help your children and your mother! This is a difficult time for you but you really should let your loved-ones help you through it.