I got it from my neurologist when my diagnosis was confirmed. He explained it in great detail because it was specifically that along with an ANA negative test that was the thing that finally clinched it, after all the evoked potentials tests were clear.
Very frustrating to get conflicting information isn’t it?!
Appreciate looking at all angles. Does seem that to have the protein in both supports many inflammatory diseases 
Who knows. All I know is that I have lesions coming out of my ears and constant pain amongst many other symptoms. It’s a multiple pain in the ass 
I was in your position for a while. Multiple lesions brain and spine, and years and years worth of symptoms and clinical evidence of 3 clear cut relapses, but because the evoked potentials were clear, they dithered about for a bit until the LP and ANA finally ruled out anything else. It’s completely rubbish that we don’t seem to get sufficient help with symptoms until a diagnosis is confirmed. There must be a better way!
Absolutely. My GP would still have me as suffering with Anemia if I hadn’t been such a pain and kept pushing.
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I have no idea if any of this ever helps anyone but I feel it might.
I’ve received my thoracic and lumbar spine MRI results. I’m beginning to wonder if there’s a totting up scheme for quantity of lesions!
Allow me to list what is known from a test perspective -
- Brain - around 16 lesions with many of them showing T1 black hole transformation
- Cervical spine - 2 lesions
- Thoracic spine and lumbar - 5 lesions (didn’t even know that could be a thing)
- Oligoclonal bands
- EEG - clear
- EMG - clear
- Hypophosphataemia
- Liver - clear
That’s the testing side.
Physically, instead of listing it out, I’m a mess. The main issues I have are crazy pains in the head constantly and random attacks elsewhere, massive fatigue, spasticity with cognitive issues.
I have a follow up with my MS clinic neurologist to go through the latest findings. I must admit to being a little apprehensive about this. She was so dismissive last time that I came away feeling like I’m just making all this up!
Hi,
Im not medically trained but if i was you i would get a ana blood test to rule out lupus as the bands in your blood suggest that there is inflammation in your whole body ,
With ms the inflammation is of the brain and central nervous system hence why you need to have unmatched bands in your spinal fluid.
Hope you get things sorted
Best wishes
Wobbly
Hey Wobbly
Thank you for responding, yes I’ve been checked for Lupus because my mother has that, was checked quite early on.
Interesting that you also thought that about the OCB’s the paper I linked above is the clearest one I’ve found on it but what you and another on here stated isn’t true. I’m Type 3 with matching ocb’s in serum and csf.
Link here, for ease: Application of oligoclonal bands and other cerebrospinal fluid variables in multiple sclerosis and other neuroimmunological diseases: a narrative review - PMC
I believe it’s SPMS because I’m pretty sure I’ve had a few relapses in the past that were shrugged off as stress by my GP’s and this would explain the black hole lesions after this latest ‘relapse’. It’s either that or I’m just falling a part as some kind of medical wonder. 
Thanks for joining in. It’s quite a lonely journey this 
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Hi
Thanks for the reply , the doctors also put my symptoms down to stress for years before i was finally seen by a neurologist who thought i had a brain tumour
My doctor laughed at my list of symptoms and threw it in the bin and told me not to go back with the same symptoms
The neurologist got me an urgent mri which came back with multiple ledions and dawsons fingers
After that i was put in the most likely ms category untill i had a lumbar puncture
Nine months later (yes thats not a typo)
I had the lumber puncture which confirmed the diagnosis
All this took years and having to fight to be heard
I was having back to back relapses so was advised to hit it hard and fast
I have been having ocrevus infusions for 3 years now
Hope you get answers soon
Wobbly (lawrence)
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Hi Lawrence
9 months? Wow. I first went to see my GP’s in April 24 not having a clue what was going on but I felt like I was dying.
Chest pain and palpitations along with shortness of breath made me go to see my friend, who is a cardiologist. He listened to my ‘story’, heard that in December 23 I had a head on collision and thought that it sounded neurological, sent me for an MRI (head) and the rest is history. My GP is agonisingly rubbish so I’m very thankful to know a cardiologist!
Interesting about ocrevus infusions. I’d never heard of it, thanks.
My bottom lip has started going numb and twitching 
it’s so much fun having your machine slowly fall apart isn’t it?!
Appreciate the response. Going to speak with my GP today, for some reason and the neurologist on Friday. Hopefully I’ll know more by then. It’s weird to get used to this constant pain and the doing of random things like putting the thing away I just got out and then wondering where said thing is
Chris
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I saw the neurologist yesterday and we discussed my lumbar spine MRI results.
First thing first, she agree’s that it’s most likely to be SPMS going by my symptoms, test results and history but she isn’t willing to diagnose me yet because, drum roll please, she believes that I may have Ankylosing Spondylitis due to the findings in my MRI. So that’s just dandy. I have to wait around six months to be seen by Rheumatology and I imagine another lengthy process like this one!
Running projects for new cars was less painful 
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