Hello, I am new here…care for my wife who has been really ill last 7 weeks finally developing optic neuritis which is why I am here. We are still awaiting MRI on brain for confirmation of diagnosis but the neurologist said optic neuritis, if the scan shows lots of white patches then there is a 75% chance she will go on to develop MS within next 5 years, if the scan is clear than only 25% chance.
Incidentally this phase all started, in the New Year with nausea and vomiting, cough, hiccups and reflux…does anyone else have experience of this in association with early MS symptoms or maybe this was just coincidental?
It sounds like your wife (and you) have had a really miserable time I hope things improve soon!
When I read your post, the vomiting and hiccups/hiccoughs made me think of something in the paper that outlines the most up to date diagnostic criteria for MS. I’ll copy and paste what it says at the end.
Obviously I’m not a neuro and this may be a total red herring, especially if she doesn’t have any symptoms that would be associated with spinal lesions (i.e. weakness or strange sensations anywhere below the neck), but the fact that your wife had these symptoms and now has optic neuritis makes me wonder if she should be tested for NMO (also known as Devic’s disease) - a condition that is easily confused with MS.
These vomiting/hiccough type symptoms can and do happen in MS, they’re just not all that common so it might be worth asking your GP or neuro about the NMO blood test (for AQP4 antibodies), especially if your wife’s brain scan is inconclusive? The neuro may well be running it anyway, but it’s not exactly unheard of for things to get missed!
I hope you don’t have too long to wait for the MRI appointment and results - waiting is often harder than knowing!
Karen x
“In its current review, the Panel focused specifically on the often-problematic differential diagnosis for MS of neuromyelitis optica (NMO) and NMO spectrum disorders. There is increasing evidence of relapsing CNS demyelinating disease characterized by involvement of optic nerves (unilateral or bilateral optic neuritis), often severe myelopathy with MRI evidence of longitudinally extensive spinal cord lesions, often normal brain MRI (or with abnormalities atypical for MS), and serum aquaporin-4 (AQP4) autoantibodies. There was agreement that this phenotype should be separated from typical MS because of different clinical course, prognosis, and underlying pathophysiology and poor response to some available MS disease-modifying therapies. The Panel recommends that this disorder should be carefully considered in the differential diagnosis of all patients presenting clinical and MRI features that are strongly suggestive of NMO or NMO spectrum disorder, especially if (1) myelopathy is associated with MRI-detected spinal cord lesions longer than 3 spinal segments and primarily involving the central part of the spinal cord on axial sections; (2) optic neuritis is bilateral and severe or associated with a swollen optic nerve or chiasm lesion or an altitudinal scotoma; and (3) **intractable hiccough or nausea/****vomiting is present for >**2 days with evidence of a periaqueductal medullary lesion on MRI. In patients with such features, AQP4 serum testing should be used to help make a differential diagnosis between NMO and MS to help avoid misdiagnosis and to guide treatment.” http://onlinelibrary.wiley.com/doi/10.1002/ana.22366/abstract (Click on “get pdf” to download a full copy of the article. This extract is from the second page, page number 293.)
Thank you Karen, that is really useful info. It is worrying when they tell you it could be an early indication of MS…as one doesn’t know what will happen next, will she improve deteriorate etc. It took ages to get control of her vomiting, and a trip in the back of an ambulance (due to a collapse from low BP and dehydration), and only Odansetron worked (a drug she had during chemo for Hodgkins Disease 13 yrs ago!). I kind of know to take things one step at a time, from those days…but us carers still worry and try and protect our partners from what can be the realities facing us down the track.
Thank you Karen, that is really useful info. It is worrying when they tell you it could be an early indication of MS…as one doesn’t know what will happen next, will she improve deteriorate etc. It took ages to get control of her vomiting, and a trip in the back of an ambulance (due to a collapse from low BP and dehydration), and only Odansetron worked (a drug she had during chemo for Hodgkins Disease 13 yrs ago!). I kind of know to take things one step at a time, from those days…but us carers still worry and try and protect our partners from what can be the realities facing us down the track.
Hi there Roberto and welcome to you and your wife.
I notice that you said that your wife had Hodgkins Disease 13 years ago. I had that too in 1990 (stage 2a) and it started as a swollen gland in my neck. I had a small course of chemo and several weeks of radiation treatment. Anyway 4 years ago I fell ill with what the doctors thought was a virus, I had numbness down left side of body and weakness down the right (neck and chest area). After 6 weeks I started to feel better, but I dont think i ever got to 100%. 9 months after the attack my right leg would feel weak after walking a long distance. I went to a neuro 2 years ago and had MRI and lumbar puncture. The MRI showed a lesion on the cervical spinal cord and the LP was clear. That neuro gave me a diagnosis of “delayed radiation myelopathy”. with no cure just manage symptoms. I was then sent to another neuro for botox into spastic muscles and he disagreed with the DRM diagnosis. His thoughts were more in line with MS. So I had another MRI (brain and neck) and LP. No change in results so he has not given me a diagnosis. First neuro still stands by his diagnosis to DRM caused by the treatment that I had for the Hodgkins Disease!
I hope things improve soon!