Misdiagnosis? I'm new here!

Hi all

I’m new here! I’m in limbo at the moment. For the past 5 years I had been lead to believe my symptoms - pain, fatigue irritable bowel/bladder etc were due to fibromyalgia and that the jerks I’ve been experiencing are a form of epilepsy.

But 3 weeks ago I suddenly couldn’t walk. I went to A + E and they identified that the reflexes in my knees were too sensitive aswell as my legs feeling like they were lead weights. They did tests including MRI which showed areas of white plaque and also did a lumbar puncture to ‘rule out’ MS. I am now waiting for them to send me an appointment to get the results.

I am just wondering, was anyone else diagnosed as having something else which ended up being MS all along? In my mind it all seems to fit into place that I’ve been suffering from MS all along - although obviously I’m no expert but they did say that when the did an MRI 3 years ago whilst investigating the epilepsy there were areas of white plaque then but they were smaller than they are now! I was never told this at the time though!

I’d be interested to hear if anyone else has had a similar experience to me.


Sarah :slight_smile:

quite a few have had the same experience.

boudicca for one.

anyway hopefully now you’ll get a firm diagnosis and some treatment

good luck

carole x

Hi, yeh I have been tossed all over the place diagnosis wise.

But in a different way to you.

From 1998 - 2003, I was suspected of having PPMS. The rapid deterioration in my mobility was very PPMS like.

From 2003 - 2010, I was given a 95% diagnosis of PPMS.

I always felt I did have MS, but 4 MRIs, 2 LPs, 2 EMGs and other tests came back normal.

Then out of the blue, a new neuro diagnosed me with HSP…Hereditary spastic paraparesis.

The following year, this was overturned and PPMS was back on the cards!

Move on another year and PPMS was ruled out in favour of Spastic Paraparesis/cause unknown.

Fun, innit?

luv Pollx

Thank you for your replies ladies! Sounds like you’ve had a hard time getting diagnosed then - there was me thinking the lumbar puncture would solve it all! The only slight light at the end of the tunnel I can see if that the jerks they thought was a form of epilepsy ends up being due to MS I might be able to get my driving licence back! And it would be great to be able to get some proper treatment!

This seems like a really good forum, just reading through other peoples’ stories has helped me, and just knowing there is some support out there is nice.

Thanks again

Sarah :slight_smile:

Hi Sarah and welcome.

I was dx with ME at first. The ME specialist sent me for a brain MRI which showed ‘bright spots’. I was dx with MS after a positive lumbar puncture. A year or so later dx with PPMS.

Looking back I realised I had been having mild symptoms for about 10 years.

This is a great place to be for advice and friendship. Plenty of support on here. Don’t know what I’d do without it.

Good luck with all the tests,

Pat x

Hi Sarah. Welcome to the board. I was diagnosed with Myasthenia Gravis for a year before some of my symptoms didn’t fit the diagnosis. Was referred to Neuro and diagnosed with MS. Hope you get a firm diagnosis soon and get started on some sort of treatment.



always strongly suspected it xx

Thank you for your replies, as I’ve said I don’t have a formal diagnosis yet but one of the things the neuro said before I left hospital was that neuro rehab and physio might help me walk - do any of you know if these are helpful in MS? I haven’t yet been referred for either of these.