So I first posted about 3/4 weeks ago… Telling my life story and asking for some help and some lovely people posted back giving me a kick up the bum to go see the Dr, so I made an appointment which I attended she was very nice and understood my concerns but assured me that I was probably getting ahead of myself she would run some bloods and have a look of my med notes and I was to go back last Monday to get results and see where things were!!! Well I wasn’t prepared for what came next and it’s taken me a week to get my head around it!!!

Verbatim this is what she said… Mrs ??? I have taken a good look at your med notes and have consulted with a colleague and it is our opinion that you have benign MS which may now be remitive relapsing MS, I have booked you a referral with a specialist which will be sent to you directly, do you have any questions??? WTF do you think!!! (Sorry for the expletive)

She went on to say that they had come to this conclusion using the McDonald critirea and that this is what the consultant will use along with an MRI if he thinks another one is nessaccery as I had one back in 2000 that showed inflammation and the symptoms that I have had in resent years should be enough to give a conclusive diagnosis… Is this true?? I have been reading up on it and I’ve just confused myself so much…

My hubby is serving away at the moment and I don’t want to tell my family at the mo I have told a close friend and all of you now… What is happening to me I feel like my whole world has just fallen apart!!

What a STUPID thing for your GPs to do. Not only are they WAY out of order, they are talking rubbish!

The way out of order thing: they are not allowed to diagnose MS for the simple reason that they are not qualified to do so (i.e. they don't actually know enough to do so) and, for that same reason, they are not qualified to be comparing MRI scans with McDonald criteria (do either of them have a qualification in neuroradiology?!). For all we know they may have been counting completely normal white spots as lesions! If we assume that they were going from a radiologist's report which stated that you met the (then) McDonald criteria, why the **** weren't you told and why haven't you been referred back to a neuro years ago?!

The talking rubbish thing: benign MS is a diagnosis that can only be made after 10-15 years of relapses with excellent recoveries and minimal (if any) disability. Maybe you fit that(?), but then we come back to the above - they are not allowed to diagnose MS, no matter what type!

Now I've got that out of my system(!), it can only be a good thing that you are being referred to an MS specialist. You've been living with this for years (if I remember correctly), in which case and IF it is MS, getting a diagnosis is not going to change things very much, after all, your MS doesn't care what label it has. It will however get you access to proper support, make things easier to explain to people, give you the protection of the Equality Act and potentially allow you to pay off your mortgage (if you have critical health cover).

So, in reality, things will actually just continue as they have been - but with a new label for the weird things that happen to you from time to time.

Karen x

What a shock - no wonder this has left you reeling.  

GPs are not normally as forthcoming as that about their views on what might be wrong - I think that most of them keep their suspicions to themselves even if they have a pretty shrewd idea what the problem is.  You now have the GP's opinion, for better or for worse.  Now it's over to the neurologist for the specialist opinion.  You don't have a diagnosis yet, as the GP said.  That is the neurologist's job, and that might be a straightforward business, or the neurologist might want to do a lot more work to look at other possibilities before even contemplating giving you a diagnosis of anything. Time will tell.   

For what it's worth, many of us have had that bombshell moment.  It's not a good feeling when suddenly the solid ground shifts under your feet and the whole world suddenly feels totally changed and bizarrely the same, all at the same time.  If your GP turns out to be right, please remember that an MS diagnosis is not the end of the world.  The ground gets solid again and life goes on and is good once more.

In the meantime, be gentle with yourself and try not to panic.  That is so hard that your husband is serving away just when a hug would come in handy.  I'm glad you have a friend you can confide in, and you know we're here.