I’ve been suffering with nerve pains, pains in random places, memory and cognitive issues. I was refered to a neuro who booked me and mri, nerve conduction and neuropsychology.
The day after my neuro appointment I was booked a follow up in Feb and then had my MRI 4 weeks ago. I recently recieved a letter from my consultant to my GP where it stated
“I will request head and whole spine MRI for him to rule out central demyelination and
myelopathy. Moreover, nerve conduction study for polyneuropathy,. I requested blood test
with anti-neuronal antibodies as well”
Does the way it’s worded “rule out” mean my neuro thinks it’s unlikely to be central demyelination? Does that fact I’ve heard nothing and my appointment is still 2 months away (although it was booked before the mri) mean I shouldn’t worry, or would they book an appointment sooner if they found anything significant like ms?
They are offering you all the usual tests that they do when they suspect MS. Full blood count, MRI, etc. They can’t diagnose MS unless they have ruled out other causes, such as lupus, etc. An indication of MS may be best offered by lumbar puncture. However you need to remember that they can’t diagnose MS if the MacDonald creteria are not met in both space and time. That is why they ask for more MRI tests.
Sorry. I forgot to add. No, they are slow with results. They take ages. Call the hospital and remind them to post the results to you. That’s what I do. They are slow regardless of what they think may be causing the health issues. It took me 3-years to get diagnosed. I now have an MS nurse who responds to my emails within 24 hours, bless her.
Thanks for speedy replies. I’ve only had the one mri so far, I just didn’t know if I will have a seperate letter or appointment before my scheduled follow up in Feb (which was arranged before me mri) do you think I should get a letter then?
I take note of your journey and appreciate your guidance, and I hope that you are at least comfortable with treatment
So, it’s likely they will wait then, for the doctor to share the results with you in February. Then they will put them on the post. Thank you for your kind words. Currently I am in a good state of health.
Err huge caveat before anything else, I am running on the Japanese health care system so that might be completely different.
My own personal experience with MS diagnosis was to basically find a hint that it might be MS, and then set out to check every little thing under the sun to rule out other stuff. This was similarly done in silence, so to speak. They just kept checking and checking and checking. Then after I don’t know how many different things, well, it seems to be MS! But just to be more sure, we will do these other little checks too. From my own personal impression, it seems like MS isn’t really very clear and indeed has rather similar symptoms and such to a lot of, well, other things that may or may not be more imminently worse or need significantly different treatment.
Just a completely bonkers but perhaps easy to understand example, there is a disease called PML which might feel very similar to MS, but basically requires the opposite sort of treatment. MS has you weaken the immune system to stop it from smashing you, while PML will kill you if your immune system is too weak! So I guess if you MIGHT have something that would be very troublesome with a weak immune system, it would be quite dangerous to just blindly start standard MS treatment.
That said, this is just my completely personal take on it in a very different country. I would recommend just contacting them to ask if possible. They can likely at the very least tell you [it’s not because…] even if they cannot give a very specific answer. I imagine at least. In Japan, doctors will at least answer questions if you book a time with them. But might be harder to just randomly get an appointment where you are I guess.