Sudden death in MS or SUDMUS (1)

Hengstman & Kusters. Sudden cardiac death in multiple sclerosis caused by active demyelination of the medulla oblongata. Mult Scler. 2011 Sep;17(9):1146-8.

Cardiovascular autonomic dysfunction is not uncommon in multiple sclerosis (MS) and is related to the involvement of the autonomic areas of the brain that supply the heart; these are located in the area of the brain stem called the medulla oblongata. It has been suggested that involvement of these areas may contribute to the occurrence of sudden death in MS.

In this case report, the authors present a MS’er with active relapsing-remitting MS who died unexpectedly due to the sudden onset of cardiac arrythmias. Post-mortem examination showed the presence of active demyelinating lesions in the medulla oblongata. As far as they know, this is the first case report clearly linking sudden cardiac death to active MS on the histopathological level.

“Sudden death is very topical in view of the recent death of a patient on Fingolimod and the European Medicine Agency’s decision to review the safety of the drug. I would be very interested to know if the unfortunate MS’er who died had involvement of the medulla oblongata that could have contributed to his or her death.”

“Sudden death in MS or SUDMUS may be commoner than we think. In epilepsy, for example, it took decades for neurologists to recognise sudden death in epilepsy or SUDEP as being a major problem.”

“I feel a research project coming on; we clearly need to get to the bottom of this issue before drawing premature conclusions about the fingolimod case.”

CoI: multiple

17 thoughts on “Sudden death in MS or SUDMUS (1)”

  1. From Down Under:"Wedge-shaped medullary lesions in multiple sclerosis.""The clinical features and MRI characteristics of the medullary lesions suggest an impairment of venous drainage. We propose that the formation of these wedge-shaped lesions may be related to the pattern of venous drainage in the ventral medulla and raised venous pressure due to chronic cerebrospinal venous insufficiency which has recently been described in MS."Any comments?

  2. We had our 3-monthly London MS group meeting last night. Interestingly, 3 neurologists out of ~15, who attended, had had a patient with MS who had died suddenly. More reason to suspect that sudden death in MS has been under-reported.

  3. Re: More data on sudden death in MS from out of 276 deaths on Natalizumab in the database are listed as being due to "sudden death". I am not suggesting Natalizumab is causing these deaths, but it supports the hypothesis that MS'ers are at increased risk of sudden death, possibly due to brain stem disease.In addition, to asking Biogen-Idec and Novartis for more information in relation to the cases of sudden death, we are going to interrogate some national UK databases to see if there is any epidemiological evidence to support SUDMUS as an entity. If yes, we may be able to launch a national surveillance study to see how common SUDMUS is.

  4. Re: "Wouldn't you and other neurologists know it already if sudden death was a feature of MS?"Yes, we do know that it exists but we have always thought it was a very uncommon or rare event. However, recent events suggest it may be much commoner than expected. This clearly has implications for MS'ers and drug safety.

  5. I find this a little scary since I occasionally get episodes where my heart beats crazy fast and also (although perhaps this is not relevant) where it seems like my heart is beating unusually loudly. I will be interested to hear the results of your investigations.

  6. i am an MS'er my deases was dignosed 11 months earlier. now i am not taking any medication and under lot of depression feeling suicidal at times, due to some bad events occuring in my life. can this lead to sudden death??? i am from India..

  7. To the MSer in India: It is natural to be depressed after a serious diagnosis like MS. Are you registered with MSSI (MS Society of India)? If not, please contact the office nearest to where you live. They have chapters in 9 cities. The staff (volunteers) are very caring and they try to help MSers in whatever way possible. The helpline numbers, activities, etc for each city are on the website hope you feel better soon.

  8. Re "Can this lead to sudden death?"No; sudden death is is not anticipated; it occurs suddenly. If you are depressed you need to see your GP, neurologist or MS nurse. Failing that you could get advice and help from several organisations.

  9. When I was going through the diagnostic process some 12 years ago my case was clouded because of some cardiac issues. I had episodes of bradycardia with a heart rate of around 40 bpm and something wrong with my T wave? I was referred to a cardiologist and had numerous tests but nothing significant was found and it was put down to "idiopathic" bradycardia. I am now wondering if it may have been MS mediated especially since I have had severely low blood pressure with many of my relapses subsequently (40/20)Reading these articles have made me ponder this especially in light of the fact that my neuro has been discussing the possibility of Gilenya with me which I am now very reluctant to take up. I'm thinking BG12 would be a better option for me….

  10. I have a 1.1cm x 1.1cm demyelinating multiple sclerosis lesion on my medulla oblongata that almost killed me. It would have if my husband had not called the ambulance and I was intubated and treated for acute congestive heart failure with secondary respiratory failure. I cannot find anyone else that has had this and live, I am desperate to find someone else. If you can help please post I will recheck this website as often as I can

    1. Hello! I don’t know how I found this site and saw this post was several years ago, but thought I’d share my story. I have MS and was admitted to ICU 2 years ago for heart issues they initially thought was a heart attack. I had shortness of breath, thunder clap headache, and was very hot although my temp was low in ER. I basically went into acute congestive heart failure in the ER and I was diagnosed with Takotsubo Cardiomyopathy. It’s took months and second opinions to lead to an MRI that showed a new medullary lesion and the neuro confirmed that most likely “ the attack” was caused by the lesion. By that time I was fine but feel very lucky I got to the ER in time. Please reach out if you’d like to talk more about it.

  11. Anyone suffering from depression along with the diagnosis of MS, should be seeing a psychologist and in conjunction, a psychiatrist. Depression is common among MS patients, not a rarity. Finding your local MS chapter and participating in your local support group can help you not feel so isolated and you will be able to share your experiences with people of heartfelt empathy.As far as sudden death is concerned, that's scarey. I too, have suffered from intermittent bradycardia and hypotension. 36 bpm and 78/36. I remember one time I could not be completely anesthesitized for a TEE due to my bradycardia and hypotension, so I had to remain quite awake. (Gagging) And of course through all of that, the end result is that I did not have a PFO and no other abnormalities were found. This was the "ruling" out stage prior to diagnosis.Though at times, I was afraid to fall asleep thinking my heart would stop all by it's pretty little self.However, with that said, it was intermittent and happened more frequently 2 years ago and not so much now. Which I am grateful for. I've been diagnosed with MS since 2013 (although I know I had it long before that).My recent MRI compared to the year before, demonstrates blotchy lesions in my medulla oblongata — however, I'm unsure if it's vascular or demyelinating.

  12. My daughter's fiance had MS and died suddenly at the age of 37. I don't know a lot about MS but am trying to understand what happened to him.

  13. After 30 years with Multiple Sclerosis my recent MRI showed a 7.5 mm lesion on the anterior pons , no enhancement . Whoopi.

  14. My sister died this past year from sudden death and she had relapse-remitting MS. They have attributed her death to MS. I would be interested in seeing more about this topic. Do you know where I can find some more info/articles?

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