Hi All
Had an MRI 5 weeks ago due to suspected MS by Neurologist. He said should only be a couple of weeks to get radiologist report back, physiotherapist checked for me today and said it’s still not back. (having physio for joint pain)
So, just wondering how long others waited for their radiology report?
I’m just curious, as just left twiddling my thumbs wondering what’s causing my symptoms but also struggling with managing my symptoms. (no one will offer much help until radiologist report is back!)
And, how long did it take for others to get diagnosed/go through the diagnosis process?
Thanks
Hi there. I’m pretty new to MS, and I don’t know if what I say will help, but I had an MRI scan on my head on 23rd Oct last year, and a week later I got a phone call to come in to the Neurologist the next day. I couldn’t make it, but went in on the 3rd Nov, when I was told it was def MS… and deep joy, I wouldn’t even need a lumbar puncture. So, I make that 11 days to get a result, but they knew within a week. I’m on NHS treatment and in Northampton.
Having said about the quick turnaround between scan and diagnoses, I had been to the GP and various hospital departments somewhere between 10 and 15 times in the previous two years - since I first noticed a real problem with walking and balance.
I’m a keen Internet detective when it comes to symptoms, and I’d begun to rule things in and out within months of my first stumble, I even asked my GP “Any chance it could be MS?”. “No, it’s not that” came the swift reply. I haven’t seen her since, and I doubt she’d remember anyway.
My main concern is that they only ‘think’ it’s PPMS (mainly because I asked if it was that) and it seems the only treatment I’m getting is to be monitored by an MS Nurse every six months, and the occasional visit to a physiotherapist.
I understand that MS is a difficult disease to diagnose properly, but I wish I knew more about my variation of it. Maybe I’ll learn more as time goes on.
I hope you get a response soon about your tests.
It’s really a matter of the length of a piece of string as to how long you’ll wait. Different hospitals / neurologists will have different standards. Try phoning your neurologists secretary to ask when you’ll get an appointment to discuss the scan.
My experience wouldn’t have any relevance to yours I don’t think, my first MRI was 21 years ago.
Sue
Alan, well done on getting a relatively quick result. I’m surprised the neurologist is leaning towards PPMS since generally it’s only after some time has passed that it’s clear that your symptoms have never improved.
Have you found that over the last years while you’ve been noticing symptoms that they have never got any better? That there has been no pattern of symptoms that develop over days or weeks then a gradual improvement, even over months? If it has just been a straightforward symptoms come and just stay the same or get worse over time, then maybe the neurologist is right and it is PPMS.
But if there is any doubt in your mind about possible remission, then next time you see the MS nurse or neurologist, ask again about the type of MS. If you were to start keeping a symptom diary, you might be able to track it more easily.
Sue
Hi Sue, thanks for your reply (although I don’t want to hijack the OPs post). I must admit, the only reason that I - and probably the Neurologist- think it’s PP is that there hasn’t been even one day since I first noticed my problem, that it’s felt any better.
My main problem has been the energy sapping weakness of my legs, and the inability to walk in a straight line. I’m totally drained after even mild exertion, takes me a while to recharge.
It must have started gradually, but as my family have said, they noticed I huffed and puffed about walking several years ago, and as long ago as five years, I couldn’t risk running anywhere, and I was very stiff legged. It’s definitely constant, and has gradually got worse over the last 2.5 years, but it seems even the experts can only take their lead from what I tell them.
Must go, I’ve wasted my weekend recovering from work, and must iron and eat 
It’s OK Alan, I am interested in people’s stories.
Hope you are well
I am still waiting for my results, it doesn’t seem like I am the only one waiting after reading the posts on this forum!
Just got my Brain Scan result after 6 weeks…Result of brain scan is White Matter Disease…I have not the foggiest what that means??? I had a Lumbar puncture prior to the brain scan which showed High level of Protein in spinal fluid… Sorry to latch on to your post but can anyone indicate what all this means…I am undiagnosed MS.
Blimey Ivan, what are you meant to do with that?
Who gave you the results of the brain scan and LP?
Have you seen a neurologist? And asked them what White Matter Disease is?
Is it another, diagnosis altogether from MS?
Sorry, I have absolutely no idea what it means. Sounds a bit scary, but is it?
Sue