I’m very new to all of this and feeling pretty out of it to say the least.
I’ll be brief.
I have a brain MRI showing multiple lesions and demyelination, I also have a cervical spine MRI showing the same as well as a lumbar puncture showing oligoclonal bands with the ‘protein’ present in both serum and CSF.
Every time I see one of the neurologists, they treat me like I don’t have MS because my symptoms don’t fit.
In my mind, I’ve smashed the McDonald criteria although, granted, I’m awaiting to have the MRI’s repeated but with contrast dye.
My question is - is it really this difficult to get a firm diagnosis and is there anything else it could be?
Hi unfortunately yes it is especially depending on your postcode. I had VERY similar results to you and it took another year to get the diagnosis after a fresh lesion and my local A&E/medical drs on multiple wards pushing neurology to diagnose me. I should add the caveat that I fell pregnant in-between and my symptoms improved (common with pregnancy).
My mum who was an inpatient at glenfield spoke to the nurses about me and they said my hospital only diagnose when they really have no choice because they don’t have proper MS facilities and they don’t want the extra numbers on their books
Hang tight keep fighting and if you’re brave enough ask for a second opinion to put your case across. I wasn’t and fell into the “it’s all in my head” scenario when I wish I had pushed further.
Thank you for responding. I’m in the so called MS centre of excellence at Royal Stoke hospital. I’ve seen three neurologists so far that keep doing the same tests (follow my finger, touch your nose, pin pricks on my feet). All the while I’m thinking, “well yeah but I’m in utter agony, struggle to stand up, constantly knackered and many other things…”
To top it all off I also have liver disease (just found out) and for one who doesn’t drink, eats healthy and exercises as much as possible, it’s all a bit much!!
Anyway, I have lucid moments in the morning so sent the neurologists a stern letter (how very English) to outline why I think they’re being daft
It’s frustrating isn’t it! I passed all their physical tests bar sensation… until I didn’t lol the last time I was sent to a&e the doctor said if it looks like a spade it’s a spade you have MS
I’m glad you sent the letter keep us updated on how things are going
Hi it took seven years for my diagnosis I saw two neurologist the first one said
It was my back I knew something was not right the second one did tests said was ms but confirmed it after having lumbar puncture that was 2018 I have deteriorated a lot since then hopefully you get answers soon good luck with things
I have a really stiff and painful neck and lower back plus find it very increasingly difficult to walk through the day, asides the terrible fatigue and banging head and all the neurologist keeps asking me ‘but what neurological symptoms do you have?’
That’s what really confuses me. I have the oligoclonal bands in both serum and CSF from the lumbar puncture. Many many lesions in my brain MRI and also my cervical spine MRI. I believe it’s because I come across as mobile. The thing is, I am so very diminished in capability, the people I see think i’m fine yet those that know me can see i’m struggling. Asides, all the data, as far as I can tell, makes it quite clear that it’s MS
Have you asked the to put in writing and in detail .exactly why they don’t think you have MS and why they are excluding that diagnosis ? Don’t take any obfuscation and vague generalities
I have indeed. I listed all the difficulties I am having (which are wide and varied but mainly painful), that I have spine and head MRI showing lesions and also oligoclonal bands matched in serum and CSF. As far as i’ve been able to research, MS is pretty much the only thing that ticks all the boxes. I did think it could be Lupus but I don’t have all the symptoms for that.
Had a repeat of all the MRI scans yesterday with and without contrast. That was fun!
Still, I have found some medical papers saying that lesion don’t necessarily have to show up. Confusing times.
I have 3 lesions in my brain, which have nothing to do with my MS symptoms (and haven’t changed in 11 years - probably left over from a concussion caused by my Tomboy nature) - predominantly pain/numbness, balance issues, fatigue etc. I had symptoms of spinal lesions about 3 - 4 years before a spinal MRI managed to spot the lesions themselves.
Has the Neuro suggested a physical cause for the pain you are in? If not, why not?
See if you can get a referral to Rheumatology to rule out Lupus, that was one of the list of conditions I went through, ticking them off one by one. Doesn’t hurt to be thorough. They referred me to Orthotics who have helped with insoles to correct my foot position which has improved my ankles, knees and hips - much less pain from that quarter now.
Hang in there, and keep pushing for an answer to what is going on.
Have you considered asking for a second opinion? I think you have reasonable grounds. I recall reading of others on here doing just that, but don’t know how they got on. If you use the search box at the top of the page (magnifying glass symbol) there are a few discussions on the topic but I’ve not read through them.
Thank you so much for your response.
I have, many lesions on my brain MRI and four on my cervical spine MRI. They also pointed to cerebral volume loss.
So, lesions all over the place and matching oligoclonal bands in serum and csf. Usually MS, right?
I have insane fatigue. Short term memory loss and speech issues but you know what? I’m starting to doubt MS but I don’t know whether that’s due to the neurologist not being convinced or…… oh I don’t know?!
Feel like I’m going mad anyone remember that book Lord fouls Bane?
Not sure if this will be helpful or not, but matching oligoclonal bands in both serum and CSF is a negative result. A positive result is oligoclonal bands in the CSF alone. Although from what I gather, if there is sufficient evidence from other tests to meet the criteria, the LP result wouldn’t necessarily override a diagnosis.
All information sharing is great. I’d love to read where you got that from because from what I’ve read matching in both serum and csf is type 3 and positive for MS.
This paper touches on it also
Got way too much time on my hands these days so love to read so I’m more than happy to read anything to the contrary. As I said to my neurologist, I couldn’t care what it is as long as we get to the bottom of this nightmare
