Last reply 1 year ago
Confused! lol

Hi just wondering if anyone can advise? I have had an mri scan and initially was told by my neurologist that i had two areas of high signal in the periventricular regions and that was suggestive of demyelinating disease only to be told in the same letter that i did not have ms.  At this point my gp wrote to my consultant and asked for clarification as they are both the same but i was then told in the 2nd letter that i only had 2 lesions and that 10 or more would only confirm ms.  Can anybody please offer some advise as i need to know if this is something i need to push with my gp/consultant.

Many thanks, Helen

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hels99
1 year ago

I don’t think it is about the number of lesions (I don’t know how many I have and my consultant won’t tell me!). They often (but not always) wait until a subsequent MRI shows new lesions ie progression. That said there are other medical conditions that can cause lesions and they usually do a range of tests to inform a diagnosis of MS such as a lumbar puncture. It is worth pushing. In your shoes I would want to know why they have ruled out MS, what else could be causing your symptoms and what other investigations they plan to do. You could also talk to your GP about getting a second opinion.
Goood luck!


hels99
1 year ago

Btw my consultant (who is an MS specialist) said I didn’t need to know because the number is irrelevant. I’m not comfortable with this but your post is the first thing I’ve read or heard about the number ten!


spunky
1 year ago

Hi
I was diagnosed with 5 lesions and one clinical episode by a neurologist and then a MS neurologist. I would push for a second opinion and see if you can be referred to an MS Neuro if you aren’t already seeing one. Good luck and remember knowledge is power.


potter
1 year ago

I was also diagnosed with 5 lesions my my neurologist. Potter


doubleo7hud
1 year ago

I’m supprised they found a brain on my MRI that’s not the size of a coffee bean, not to fussy knowing how many lesions there are it’s there and I’m blooming astonished ? tbh. It is nice to read about other people’s experiences and advice given I think I’d be knackered without shift. I’m prepared and ready thanks peeps


helen_hough
1 year ago

Well i was quite surprised they found mine too eventhough my husband thinks i was led upside down! The consultant said a lumbar puncture was not needed as the mri was conclusive evidence and there were no other symptoms which is comical as all my constant symptoms point to ms. Think it will be a trip back to the gp to request a 2nd opinion..


sonia1984
1 year ago

@helen_hough I have never heard having to have ten lesions to confirm a diagnosis. The doctors need proof on MRI of the development of new lesions. I already had 4 old ones on my brain when I went in for testing but they also saw 2 new lesions on the MRI. This was followed by another relapse close after with a couple more small ones that formed after yet again another MRI. Even with all this conclusive evidence on MRI they still needed to follow with a lumbar puncture. I think it’s wise you are going in for a second opinion. Good luck.


Anonymous
1 year ago

I had an MRI scan at 8:30am on an Sunday morning
a, they found a brain, even though I know it doesn’t function at that time in a morning
b, it was lit up like it had a string of fairy lights but they still wouldn’t confrim officially until I had a lumber puncture.
So I’ve never heard anything about a minimum number, I just reckon some of the medicals don’t like handing out the ‘sentance’ until they are sure.

BTW I must be odd because I loved my lumber punture, yes it’s uncomfortable, but the headaches I’d been having constantly went instantly, something to do with excess spinal fluid
& sucking a bit out releaved the pressure.


velvet
1 year ago

I can’t remember how many lesions I had but it certainly wasn’t 10, I think it was more like 3 or 4.

It did take a while to get a diagnosis though, after my first relapse I had an MRI which came back clear and just had to wait and see if anything happened again. Had another relapse and another MRI which showed lesions, then had to wait several months and get a lumbar puncture, evoked potentials and another MRI before I got my diagnosis.

Good luck with your second visit and I hope you get some answers soon.


sonia1984
1 year ago

I think the rule of thumb is you have to have proof on an MRI of two consecutive attacks. Well with Ms you can go years in between attacks and might not necessarily follow right away with that second attack. The doctor said I was lucky in a sense that due to having an initial MRI that showed the 2 new lesions and within a month having another MRI while admitted in the ER they found my second attack. Lumbar and evoked were to follow. They might just monitor you but if you do notice new symptoms you should report it to your neurologist as they will most likely want to follow with an MRI. Ms is very much a wait and see approach trust me I know it took 16 years just to have such noticeable symptoms it warranted an MRI.


stumbler-test
1 year ago

@helen_hough , a diagnosis of MS is not given lightly, as it cannot be “ungiven”.

There are criteria that have to be fulfilled, before a Neuro is happy to make a diagnosis. More details here :-

https://www.mstrust.org.uk/a-z/mcdonald-criteria

This should provide the information for you to have an informed discussion with your Neuro, if you feel that you fit within this criteria.

PS Excuse the strange username – Stumbler is presntly unavailable. 😕


sandwich
1 year ago

Rubbish. Look up the 2010 McDonald criteria.


doubleo7hud
1 year ago

I was told I might I don’t need A lumber puncture neuro is almost certain it’s MS just from poking me in my legs and me pulling her finger (phhhreeeerrrppp!!!) just awiting results from giant space invaders noisey tube thing on Monday. And hope I skip that bit and I can add it on the list with the avoiding a finger in the stink hoyal.

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