I am just interested to see if any of you lovely people have had MRI scans after diagnosis ? I am interested to see how many new lesions would be expected in PPMS per year. This is documented for RRMS but not PPMS.
My first scan to show something dodgy was in 2011. I had another in 2012 (no change). June 2013 - normal !, October 2013 same dodgy area back again. I have just had my 5th and dodgy area still there but no significant difference since 2011. Yet in 2011 my walking problem was so so slight and now I have obvious foot drop/spastic gait.
I am wondering if the lack of new lesions would rule out MS. My neuro says probably and I hate that answer as I would like be able to confidently rule out MS once and for all.
I hope that you are all as well as can be expected.
Hi Moyna, I’ve had one scan since dx. Nobody told me if there were new lesions or not.
The point worth remembering is it’s not the amount of lesions that make the difference. For instance someone with only a few lesions showing could be really disabled with MS and someone else with a bunch of lesions showing could only have mild symptoms.
So it’s where the lesions are and how damaging they are that make the difference.
Also worth remember that scientists know far more about the solar system than they do about the brain.
I can’t remember if you’ve had a lumbar puncture or not? I assume you have. It’s so difficult for you to be stuck in limbo and I really sympathise.
Have you thought about seeing a different neuro?
I changed neuro when the one I had been seeing said I had ‘benign PPMS’ (I was already having to use mobility scooter and was too unwell to work). The new neuro laughed at that. Said there’s no such thing as benign PPMS. The clue is in the name!
It just goes to show how neuro’s can vary considerably in their understanding of MS. Might be worth changing?
I had one scan as part of my diagnosis. I remember one GP saying my symptoms were probably going to be benign and my MS would be little more than a minor irritation. I got rid of him!
I saw some lesions on my original scan but have not had a scan for that since. I think it was the CSF (the lumbar puncture) which gave the confirmation of PPMS. It’s certainly not good being left uncertain about your condition. I was repeatedly going to my GP with symptoms in the eighties and it was as if they were in denial about any link to MS.
Unfortunately the simple fact of your foot drop points to MS. When I noticed mine at first I had to stop taking myself for granted and gave more consideration to what I did and how I did it. It didn’t stop me, it just made me think more. It does sound as though a second opinion would be useful. I don’t know how you would change your neurologist-perhaps approach your GP.
I’ve had loads of MRIs… Several before and after dx, my neuro says he likes to know what’s what but to be honest he’s never said if I have more lesions…I think Pat has given you good advice, it’s more about where they are rather than how many.
I’m so sorry you are still in limbo land …I am very lucky with my neuro but again as Pat has said you might be better off trying a new one…especially if you can find one who specialises in MS.
Thanks everyone. I have seen a total of 3 neuros and all with experience in MS. They have all suspected MS initially but then drawn a blank when they see my test results. I have also had 2 negative lumbar punctures and 2 negative VEPs. I dont suffer from fatigue, memory, bladder or vision issues thank goodness. I do have IBS but have had so since my teens so I dont think that is connected.
I did have an attack in 2008 which I recovered from pretty well but I think the progression has steam rolled from that attack. I have had not other attacks.
Yesterday I read on the Barts Blog of a type of MS that is called Bout-onset presgressive MS. I am wondering if this means you can have a one-off bout (or attack) and then later develop MS or non-ms neurodegeneration from that attack.
I understand that one lesion can be worse than a whole load. Yet that would be against the odds I believe.
Over the last year the progression of the drop foot has slowed and or stabilized which is good.
Never heard of Bout onset progressive MS… but it sounds like Clinically Isolated Syndrome (CIS) which is when someone has one relapse-type episode of MS that goes into remission and may or may not become MS.
I assume Bout Onset MS is the same, but then shows progressive symptoms.
It’s all very confusing!!!
Sometimes people get a dx of ‘possible MS’ or ‘probable MS’. I think even one of those would be helpful to you Moyna. I wish neuro’s realised how upsetting and frustrating no dx can be.