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Misdiagnosed

Hi. I got diagnosed at 19 with MS after an MRI scan and have had two more over the years where very little has changed. No major relapses to report. Just a few challenging summers. Having moved up North and my new neurologist is questioning my original diagnoses. I’m 31 now and as far as he can see, completely fine. He did not however have access to my notes annoyingly so I am waiting for his thoughts on my condition in writing when he has access to my medical history.

How common is a misdiagnosis of MS? Has anyone had similar experiences? I’m all confused and annoyed actually because if he is right I’ve lost the best decade of my life through holding back, trying not to exert myself for fear of things getting worse. And how else do you explain the tingling. The fatigue (my partner reckons I’m just tired). I’ve not had any really bad symptoms though so I just don’t know any more. If I don’t have it then obviously thats wonderful news and I shouldn’t be complaining but it is just such a strange possibility and I really don’t know what to make of it. Nothing has changed until I get his feedback but it’s a mean idea to put into my head without my notes in front of him.

well you may well have just had an isolated attack, it does happen. if they diagnosed it on MRI scan the doctor must have seen something, although usually you have to go through months of waiting for another attack etc. so yes you may well have been misdiagnosed.

look up McDonald criteria, although it has changed a little since it was first written.

i can understand how you feel. sort of would be lovely if it is incorrect but also annoying after living a life differently trying not to poke the hornets nest.

It is a difficult one to diagnose and some diseases are so similar. you could have M.E. if you at 19 had any viruses going on at the time. I think you just have to wait now until the neuro gets caught up.

Thank you that’s interesting, and yes I would be relieved if it is incorrect. I remember very little about the diagnosis, my memory is quite bad which I always blamed on MS. It used to feel much sharper and I used to get top marks in everything right up to the middle of my A Levels when I first got symptoms.

As you say, wait and see. It was reassuring in a way to blame lapses in memory on something the neurologist said I have. What’s my excuse if it isn’t MS?

Strange times!

Hello

If you’ve had several MRIs and your diagnosis has not been questioned over the years, I suspect that it’s likely MS is the correct diagnosis.

If you look at https://www.mstrust.org.uk/a-z/mcdonald-criteria you can see that MRI evidence is probably the most reliable source of clinical diagnostic procedure.

Some people do have a disease process that’s labelled ‘benign’, this can flare back up later, but could account for their being no active disease symptoms. Or some people are now diagnosed with a ‘Clinically Isolated Syndrome’ or CIS (see https://www.mstrust.org.uk/a-z/clinically-isolated-syndrome-cis ).

And you may think you’re asymptomatic, but tingling, fatigue and memory problems could all be part of MS. Or not!

I suppose all you can do now is wait for your medical records to catch up to your new neurologist and then see what results. At that point, you’ll find out whether you have in fact ‘lost the best decade’ through not wanting to overtax yourself.

Sue

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