Sorry if this has been covered elsewhere but I can’t find anything posted using the search function and I know someone mentioned this recently.
I’m dx’d but have been referred for a spinal MRI (to identify what type of MS I have) and also a blood test for Devics. I don’t know if this is common as I’d never heard of Decics until I looked up the test.
Any help would be gratefully received, I’ve been unwell for some time (9 years now) so didn’t find my dx too much of a problem but now I’m starting to get a bit concerned, particularly as it looks like it could be some time before I get my LP.
My Neuro is 99% sure I have RRMS, but I am also being tested for NMO. He said he doesn’t think I have NMO, but being tested for it because the lesion on my spine spans nearly 3 segments and this seems to be an indicator for Devic’s, so he wanted to rule it out. I feel that I have had MS for over 20 years now and I have had a positive LP, so I am really confused about it to be honest! I should have asked the neuro more questions at the time I think! I have been told the results can take a long time to come back too, so I am trying to put it to the back of my mind and stay positive.
I was tested for this when my MS started presenting in a way that made the neuro think he had better check it out. It’s only a blood test. Sent off to Oxford or somewhere, if memory serves. I don’t have it, by the way. It is just your neuro being thorough, most likely. Alison x
Devic’s is a rare disorder that causes inflammation/lesions in the spinal cord and or optic nerves. I was tested for it even with non-specific lesions on my MRI though the neuro siad he thought it unlikely but wanted to be sure. Results take 6weeks roughly to come through as they’re sent to Oxford as the others have mentioned.
Try not to panic or read to much - I made the mistake of readin stuff and it sounds worse than MS. Before Dr’s were aware of NMO antibodies a lot of patients with neuro symptoms were labelled as MS only too later discover it was NMO when the tests became available. I think neuro’s now because of issues with misdiagnosis are more active in ruling this out so please don’t worry - just because you’re being tested for it doesn’t mean the neuro thinks you have it.
It’s thorough of your neuro to send you for the tests though - it means they’re still looking for answers. I know how much you must be craving an answer after 9years but I hope it doesn’t come back positive because it’s not as well documented as MS and a little more difficult to manage.
Thanks Reemz, I’m not usually a worrier (in fact I was mostly worried for family and how I would tell them if…). Tis good to know he’s just being thorough. Was just really frustrated I couldn’t find the post…
Thanks again and I will keep you all updated, should I ever get my date for that (to me) unicorn or a LP!
Hi, I’ve had symptoms for 15 years and still haven’t got a diagnosis. I was originally admitted to hospital with total loss of vision in left eye and unable to walk. I’m now with a neurogenetics team who still felt at the time my condition was caused by inflammation. They felt it may be Devics and ordered the blood test. It turned out to be negative.
Devics, or neuromyelitis optica affects the optic nerves and spinal cord. At one time it was felt to be a more severe form of MS. Some people can have a few brain lesions. The attacks tend to be more severe than MS and leave more disabilities afterwards. Devics does tend to appear in the cervical spinal cord which can lead to respiratory arrest.
In a way I was hoping my devics test was positive. I’m now still looking at hereditary disorders which means my daughter has a 50% chance of having it. My brother has recently had genetic testing done.
Or it could be primary lateral sclerosis. I’m having a muscle biopsy done this month.
Hey friends. I was wondering if any of you struggle considerably with nerve pain and take opiods? Ive been on Gabapentin (and have tried amitriptyline and pregabalin and Duloxetine) for the last few years and my pain has gotten steadily worse especially since October. Im at the point where Im unable to sleep at night (im getting 2-3 hours on average) and my mums having to help me in and out of the bath due to the pain/tingling and numbness and Im just exhuasted with it all. Ive heard that these types of meds dont work for nerve pain but wondered what youre guys experience was?
Are you aware that you’ve joined onto a very old thread about Devics Disease?
You are likely to get more help / views if you start a new post. Hit the ‘button’ marked ‘start a new thread’, give it a title and then write what help you’re after.
xx