I was diagnosed with relapsing-remitting MS this year. I was diagnosed quickly, which I am grateful for, and was seen at the National Hospital for Neurology and Neurosurgery in central London.
The neurologist I last saw at the MS clinic sent a letter home summarising my appointment with him and mentioned that he discussed the possibility of me starting DMDs with the Lead consultant at the clinic, Dr Chataway, and that they will not start me on DMDs because I do not meet the UK criteria.
In mid-December 2012 the left side of my face went numb, also my left arm. As it disappeared after a week (with no residual problems), I didn’t bother seeing my GP (I actually thought it was my root-canal work playing up so I took myself off to the dentist!) When I first saw the neurologist in January this year, he confirmed that what happened in 2012 was an MS relapse.
In January this year, 2015, the left side of my face, mouth, tip of nose and tongue went numb; I had scalp tightness/spasms; upper left back spasms; a heavy left arm (as though I’d had a vaccination); numbness in my left thumb; my left leg went heavy; I had hot/cold feelings running down my left leg; and burning/crushing pins and needles in left arm, leg and foot. The main symptoms lessened after 6 months but I regularly experience all the above, at times in lesser degrees, and intermittently but since January I have never symptom free. As I type right now, the left side of my lower scalp is numb, I have the crushing/burning in my left foot, mild pins & needles in left foot, crushing pain in upper left arm and this week, the ring and little finger of my left hand hurt and feel stiff.
The neurologist said that for me, the prognostic factors are good: I am female, I am in my mid-30s and I presented with sensory symptoms and no motor symptoms. I understand that I am probably not serious enough for DMDs, plus the NHS cannot simply hand out expensive medication to everyone, but deep down I really want to start DMDs because I am frightened of this disease.
I am doing the best I can. I go to work every day despite the fatigue (I’ve felt serious fatigue for years, but I thought that everyone was tired and it was simply a symptom of modern life), despite the pain (and despite making mistakes at work because sometimes I don’t seem able to register simple information). I eat healthily, I’ve only been able to go to the gym once a month because I’m tired, but I try to walk a lot to stay fit and I always take the stairs - despite the pain in my left hip and the crushing pain in my left foot. I’m trying my best…
I think the cut off point for DMDs is two relapses within two years – I am annoyed because if the episode of facial and arm numbness in December 2012 had happened a month later in January 2013 then I would meet the criteria of ‘two relapses within two years’. I have just missed out on this criteria, which is one of the main criteria for eligibility for DMDs.
I completely understand that I have good prognostic factors, but what if my next relapse is far more severe and also leaves me with far more severe residual symptoms?
I wondered what anyone thought about my situation. I am new to MS – I have no idea if I have a case for requesting DMDs.
I keep reading that people should start on DMDs soon after diagnosis and this is even a recommendation from medical staff on the MS Trust’s forums - furthermore Dr Chataway himself co-authored a study which recommended that newly diagnosed MS patients are started in DMDs as soon as possible, yet I have been offered nothing because I am not eligible.
I should finally add that I have several white matter brain lesions, one large white matter brain lesion, also spine lesions at C7 and T1, and perhaps more in T2 and T3 of my spine (the neurologist wrote ‘a possibility of further abnormal focus in the periphery on the right hemi-cord T2-T3’).
I’d be grateful to know if anyone one else has been told that they’re not eligible for DMDs.