Newly diagnosed - not eligible for DMDs

New diagnosis and before diagnosis
1

Hi

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.

Many thanks.

2

Hi Chloe, yep I also have sensory symptoms of RRMS. I’m not on any medication either and like you I think well shouldn’t I be? I’m scared of the disease also. I think I’ve had it for 14 years and I’m hoping and praying it stays as it is. I’ve been told the side effects of the meds is supposed to be quite bad also. Oh well good luck and hopefully we’ll be two of the lucky ones xx

3

I guess the thing to do is to document symptoms. I gives some data to work on when considering DMT. And report to your MS nurse so relapses get documented officially. The guide lines used to be two relapses in that caused significant disability. Giavanoni (Barts blog (Bart’s Trust) wrote some time ago that most neuros took significant to mean disruption of life style (Before 2015 Association of British Neurologists (ABN) guide lines.). I wasn’t on DMD after DX I reported a severe balance issue 6 months later and was referred to an MS specialist neurologist who put me on interferon beta (the most proactive thing going at that time.) Later I reported an untroubleome sensory incident that got better quicly to start with but then recovery slowed with time (classic remittance I was told) I was then put on a first line tablet DMD. So reporting and documenting seem to have been useful in my case. I had initial sensory problems too but am male that counts against me. Anyway stay vigilant and report any changes. You seem in a good prognostic group and some do report side effects to me worse than MS for them.

Best wishes,

Mark

4

Hi Rachy71, hi Vithfari

Thank you so much for your replies. The information given was helpful. Rachy - I am pleased that your MS is the same after 14 years - that’s encouraging! Vithfari - thanks for the advice - this is a sensible approach and was helpful to read; thank you.

I was keeping a spreadsheet of symptoms, but gave up in July as it is the same old stuff everyday (one day a right leg spasm lasting 5 minutes and also the usual - pins & needles in left foot/burning pain in arm/numb scalp etc; the next day everything else but also electric ‘currents’ going across my nose; the next day the burning in my left arm and dodgy left hip but no facial currents; the next day the pins and needles in my left foot and a top of stabbing pain in my back). At the end of the day, these are all sensory symptoms and the neurologists are not overly concerned with sensory symptoms, understandably.

I read articles/webpages on DMDs it seems that there’s talk in the medical world of the importance of starting a person on DMDs if they have had a clinically isolated syndrome (1 attack). And then DMDs for anyone with established MS, and it seems that the group who are left out are those with sensory symptoms who have had an attack more than two years apart. The worry is that there can be disease activity all the time even without symptoms, worsening of residual symptoms or a relapse.

I wonder if I could say to my neurologist when I next see him on 1st December that, fine, I would be happy to not start on DMDs but instead I would like to have an annual MRI scan of my brain and upper spine (I have brain and spine lesions) to check on disease progression? And if there is disease progression, even minus outward clinical manifestation, then could they re-consider starting me on DMDs?

Anyway, I take my hat off to anyone coping with MS.

C

5

Hi, I was diagnosed 10 yrs ago with RRMS. I had 2 big relapses within 3 mths of each other but wasn’t eligible for DMD’s back then. Over the years I have had small sensory relapses, being prescribed oral steroids several times over the years. Earlier this year I had a bigger sensory relapse and due to the NICE guidelines and gp notes and me pushing for DMD’s to prevent further deterioration I was granted the opportunity to start Tecfidera. I pushed for a scan in preparation of my Neuro appointment so we had all the evidence for our meeting. That was a week ago so I’m hoping to hear from the MS nurses this week. I guess what I’m saying is be strong. Push for what you think will be right for you and make sure you have the evidence to back up your decision. Good luck. Sharon x

6

The ABN guidelines re starting and stopping criteria have recently been updated. Please see link above which will take you to them. A valuable read for anyone considering starting or changing DMT’s.

7

Worth noting the guidelines refer to active disease on radiological grounds (MRI’s) as well as clinical relapses. I assume you were diagnosed on the basis of a further MRI which showed progression?

8

My email abruptly began putting my MS Soc forum notifications that I was relying on in the spam folder, so I missed the new posts.

I it’s good to have the link to the new ABN guidelines. Also interesting to note that the Bart’s Blog think that they are not proactive enough. I think the UK are near the bottom of the list of EU counties on MS prescribing.

There is the concept of smoldering MS. No medically significant symptoms but slow progression of damage. I was told random symptoms or those correlating with temperature or tiredness are thought to be crossed signals caused by existing myelin damage but sudden onset of symptoms that remain for 24 hours or more (possibly with a tail off in severity) a likely to be caused y a new attack. Pro-active MS centres do have annual MRI scans to monitor for activity. So I think that’s a good idea to ask for one. I didn’t ask at my annual review in August - I think I’ll write a letter.

9

Hi All

Thanks for your replies. Sorry for my late reply. I run out of steam sometimes and consequently am not on the ball with texts/email.

I was diagnosed on the basis of

  1. Two relapses (the facial & arm numbness in Dec 2012. And then the whole lot of symptoms on my left side - from my scalp to my foot - from January this year which still haven’t disappeared).

  2. The fact that some of my lesions are old and some are new (which meets the dissemination in time aspect for the MacDonald’s criteria for diagnosing MS. The neurologist I saw initially said that some lesions had been there a long time)

  3. The fact that I have many lesions which meets the ‘dissemination in space’ criteria. The letter from the neurologist I first saw states “…the results of the brain MRI that was performed on 19th March showed the presence of multiple rounded and oval subcortical and periventricular white matter lesions and a large periventricular white matter lesion”.

  4. The blood tests which all came back negative for any other illnesses or MS mimics such as lupus, sarcoidis etc.

  5. My second brain MRI with contrast dye which, according to the neurologist, showed enhancing brain lesions. And then my spine MRIs both with and without contrast dye which showed (as the letter I received at home states) “focus abnormal signal within the centre and dorsum of the spinal cord at C7/T1 which is associated with mild swelling. There is possibility of further focus in the periphery on the right hemi-cord T2-T3” - at my appointment the neurologist said basically in addition to brain lesions, I also have spine lesions definitely at C7/T1 of the spine and possibly more at T2-T3.

Due to the above I was given a diagnosis of MS (and was told that I wouldn’t need a lumber puncture).

When I see the neurologist in December I will ask again about the enhancing lesions because my understanding is that enhancing means active - meaning active disease on radiological grounds I think? Then there is the mild swelling in the spine, which sounds to me like the swelling is current inflammation, not old inflammation (assuming swelling refers to inflammation)…?

When I last saw the neurologist at the end of July he said that he would speak to the lead MS consultant about DMDs for me because he didn’t like the look of my spine lesions - he said that spine lesions have the potential for clinical (outward) symptoms because the spinal cord is very narrow whereas because the brain is bigger, there is a better chance of a brain lesion not causing any symptoms because some parts of the brain are either not used or the brain can grow different neural pathways (neuroplasticity) and therefore by-pass the damage. But then I saw in the letter he sent home that he discussed my case with Dr Chataway (one of the lead MS consultants at my hospital) and at present I do not meet the UK criteria for DMDs.

I think I’ll prepare some technical questions for my next neurology appointment in December, e.g. ask more about the enhancing lesions; ask about what the spinal lesions mean and whether remyelination can occur in the spine following demyelination (as it can in the brain) etc.

C

10

Enhancing lesions are considered active.

I would not want to wait until December to have that discussion but its your brain and therefore your call.

You can ask for a second opinion should you choose.

11

As humbug wrote ehancing lesions are considered active and evidence of disease activity unless MRI is ruled out as evidence for that. Since MRI is used as evidence for diagnosis it seems far-fetched to ignore it with respect to NEDA (No Evidence of Disease Activity). I too would no want to wait until December.