Late-Onset MS Patients More Likely to Progress Quickly to Disability, Study Says

Late-Onset MS Patients More Likely to Progress Quickly to Disability, Study Says

People with late-onset multiple sclerosis (MS) tend to more rapidly rise in disability scores than younger patients with early onset MS, according to study in MS patients in Kuwait that compared their scores during follow-up consultations.

Typically, the first symptoms of  multiple sclerosis occur between the ages of 18 and 40, with an estimated 20 percent of  all MS patients experiencing first symptoms after the age 40.  But late-onset MS appears to be increasing in the general population, the researchers said in their study, “Is Time to Reach EDSS 6.0 Faster in Patients with Late-Onset versus Young-Onset Multiple Sclerosis,” published in the journal Plos One.

Later onset disease can also be a diagnostic challenge, since its clinical presentation and course seems to be different from those with earlier onset MS. Few studies have traced the natural progression of late-onset disease.

Researchers at various universities and hospitals in Kuwait gathered demographic and clinical information on MS patients — presentation at onset, disease duration, number of relapses, and expanded disability status scale (EDSS) scores — using data from the Kuwait National MS Registry, established in 2010.

Their focus was time from baseline to sustained disability, defined by an EDSS score of 6.0. This score has been indirectly associated with disability progression, and is defined as the need for “intermittent or unilateral constant assistance [cane, crutch, or other] … to walk about 100 meters with or without resting.”

In total, the study included 99 (10.7%) late-onset patients with a median age of 45.9, and 804 (89.3%) early onset patients, whose median age was 26.6.

EDSS analysis during follow-up found that 19.2% of the late onset group and 15.7% of early onset patients reached EDSS 6.0.  Late-onset MS patients reached this higher disability level much more quickly — a median of 6.5 years  — than patients diagnosed with MS earlier in life, a group that took a median of 12.8 years to reach 6.0 on the EDSS scale. This difference, the researchers said, represented a 3.6-increased likelihood of late-onset patients reaching EDSS 6.0 compared to early onset patients.

Male gender and spinal symptoms at onset of MS were also significantly associated with increased risk, 1.85 and 1.47, respectively, of reaching EDSS 6.0 in a shorter time.

During this follow-up, a higher proportion of  late-onset patients (26.3%) progressed to a more severe disease state — secondary progressive MS — compared to those with earlier onset (17.8%). Researchers also reported that spinal cord disease symptoms at onset were more prevalent among late-onset (46.5%) than early onset (32.3%) patients.

“LOMS [late-onset] patients attained EDSS 6.0 in a significantly shorter period that was influenced by male gender and spinal cord presentation at MS onset,” the researchers concluded, adding, “Since the prevalence of LOMS will continue to increase, there is a need to better understand the natural history of these patients and their response to earlier institution of treatment.”

27 comments

  1. Cheryl Stroyick says:

    First time I have seen something that explains my situation I was 61 when I started to notice symptoms of MS and declined quickly to a wheelchair within a year. I have always been healthy and independent so learning to adapt has been a challenge to say the least.

    • ROBERT says:

      Wow.Sorry that you have MS at such a late stage in life.One good thing about this is you got to live many years without having MS so just be a little thankful for this even know it sucks period.I haven’t meet anyone that’s very young with this stupid disease but I heard of young ones getting it and I feel for them.We all have to stay strong for each other no matter what age we get it and pray for a crue.????

  2. Bodil Karlström says:

    Don´t believe in predictions that don´t empower you! Look at Betty Iams. I think health professionals try to break us by taking away our hope. Not much testing of the alternatives. I haven´t read a word about Terry Wahls here.
    Why?

  3. David Pepe says:

    I was diagnosed at 49 due to a vision problem which turned out to be optic neuritis. A subsequent MRI proved my diagnosis to be MS. Within a year I was in a wheelchair. After a few months I went to a walker, then just a cane to unassisted now. I can’t run but… I’m 54 now, but I’m dealing with cognitive challenges. I was assessed by a neuropsychologist and did poorly on a test. I used to teach secondary Literature, but that became too much for me to manage.
    Is this normal?

    • Tim Bossie says:

      Unfortunately, MS does have many universal traits, but each individual reacts differently to them. We at MS News Today are sorry that you can not teach any more (which is a shame as Literature is such a fascinating study), but are encouraged that you are running a little. Stay active for as long as you can and enjoy each day. Normal is really what you make it to be in your reality.

    • Debra Barton says:

      Hello. I don’t know if you will see this or if you recall this old post. I have some questions please.

      Thanks

  4. I was diagnosed with PPMS in 2011 at age 58. The disease did progress fairly rapidly as was followed by my neurologist who specialized in MS. I have volunteered for studies and have participated in some with my strict intent to further research. Most studies or new meds, for example Ocremelzub (?)by Gennentech only is looking for people initially 55 or younger. This first drug to target PPMS. Why the age barrier, and second, wouldn’t I be a good candidate for trial ?

    • Tim Bossie says:

      Thanks for the questions and comments Steve. We are not sure as to how the trials are set up (parameters, guidelines, etc) so it isn’t really right that we would comment about them. It is unfortunate, though, that you – being so close to the age – are not able to participate.

  5. CDM says:

    The symptoms described for LOMS is that of my 74 year old mother. I am so confused. We have been on a journey of discovering if she has dementia. It is a mystery. MRI shows normal atrophy and her patch has been increased to the second level, I believe 4.6 mg. I see little change and with most comments, the patch works to bring back a little concentration. She has little to zero improvement. My mother’s symptoms are muscle weakness, balance with walking, focusing (depth preception) and looks like she is shrinking away. Her mind is not great but it is not horrible. I have read and read about dementia (Lewy Body too) and it just doesnt add up. I am beyond frustrated. We have seen a neurologist that threw meds at her and now we are seeing her general dr with a better bedside manner. She doesnt have abnormal tremors. Slight but again, her hand(s) or head does not shake, etc. It is more of a weakness. Lastly, depression. It is out of the park. I believe her dr is afraid to add to her cocktail (which is not much at all). Lexapro, Wellbutrin, BP med, cholesteral med and a baby asprin. Any insight would be appreciated. Could it be possible that she has MS?

    • em says:

      could vitamin B12 deficiency be her problem? look at Pernicious Anemia Society’s site for symptoms and information.

  6. Elizabeth DiPietri says:

    I am 71 years of age and have just been diagnosed with MS. (YES, I am very thankful for the many years of excellent health!!!) Guess it can be said that this is late onset MS. From previous comments it looks like it can progress quick rapidly. One year from diagnosis to wheel chair!? My question is more like – well – I have been seeing several different doctors over the last few years. First thought was carpel tunnel – have had 3 of those tests and passed with flying colors. It has gone through more than one thing being diagnosed as the problem – including Lupus. In thinking back to when I first noticed problems, it started about 10 years ago and has thus far progressed very slowly. I have continuous (now) tingling – or buzzing – or numbness in my left hand. If it has taken 10 years to go from occasional to constant, that doesn’t seem very fast. We feel a little overwhelmed right now, mostly because of finances. We planned retirement and are not in a bad position that way – except now – well, the cost is making us wonder if we should take a wait and see attitude and put off medication until symptoms begin progressing more rapidly. Don’t know where to look or who to talk to about this decision.

  7. Bob McKown says:

    My wife was diagnosed with MS when she was 48 and 8 months later was in a wheelchair, she is now 55 years young.

    I knew something was wrong about 15 years prior to her diagnoses and through my own research I told her “I bet you have MS”, we need to get you to a neurologist. After seeing half a dozen doctors she was diagnosed with MS, from the MRI. A few doctors had said it is just age and told her she will be okay. To me it seems some doctors are ignorant of MS and need better training if they are going to be a neurologist.
    Because of the late diagnoses my wife of 35 years is now having a lot of physical and mental health problems. I am her caretaker and get some help from our kids but, they pretty much stay away because of her verbal abuse to them. I cannot have anytime for myself because my wife goes off on me (and the other person) if I have someone at home to help her while I am gone.
    Reading these articles have given me a lot to think about and ideas, thank you

    • roo says:

      that sounds more like dementia or alzheimer’s. Especially with the verbal abuse happening. I guess MS could cause anger but I would think it would be short lived in duration.

    • Donna Runeric says:

      I feel awful for you. I’m waiting for a diagnosis and suspect MS. I’ve had anger issues for years and Prozac helped immensely.

  8. Rhonda Cornelison says:

    I am 54 years old and having the symptoms of Late onset MS, I have yet to be diagnosed but I am sure this is my problem. I went to the ER having seizure type symptoms and after 3 days in the hospital and an MRI w/contrast showing no lesions was discharged and refereed to a psychiatrist, the diagnosis was I was having problems with my antidepressant. Now I am having worse seizures, tremors, the fatigue has gotten worse as has the tingling in my hands and body, I move so slow at times, my brain is telling my body what to do my body just wont respond. I have constant chest pains but my heart checks out OK, my shoulders, neck and back are constantly hurting. I am worried they will diagnose me with dementia. My husband also thinks it is my antidepressant but no one will listen. I feel so alone, what do I do?

    • Donna Runeric says:

      You are most definitely NOT alone! I should see if there’s a facebook page for people like us. If there isn’t, I’ll start one. Hang in there!

    • Leslie says:

      It could very well be you are having severe adverse reactions to the antidepressants. The squeeky wheel gets the grease. Get as much information on your meds as you can you will be extremely surprised what these reactions can be and are very disabling . It is a realty.. Once ruled out go after other possible diagnosis. I am sorry you are going through this. Please do not think the worse first , that energy May be better spent living as well as you can while you progress through this journey. I know from experiencing how hard these battles are. I am saying I understand how you feel but I certainly feel great great empathy for you at this time. It’s a hard fight when you do not feel they are listening . Wishing you the best !

  9. Tricia says:

    My dad is 65 yrs old and I have requested my dads Gp push for a neurologist appointment as I believe my dad has late onset MS. His symptoms have increased dramatically since nov 2018 and now he his having mobility, cognitive, balance, fatigue, slurred speech and bladder problems. He’s had MRI and CT scans but nothing showing. I had to request a doc app myself to discuss my dads symptoms and explain that we have no answers for his multiple issues going on. Hopefully when he sees the neurologist we might get some answers but it’s sad that it was me that suggested it could be MS to his Gp and push for more tests and answers.

  10. Richard speer says:

    Are there any positive stories concerning late-onset multiple sclerosis all this story seem negative I would like to hear some encouraging stories to

    • Donna Runeric says:

      That sounds a little unfair! But do you work in a facility that houses a lot of MS patients? Anyway, speaking for myself, my anger stems from my abilities and independence being stolen from me. And when my forearm crutches clatter to the floor, it makes me want to scream. It’s a loud reminder of my disability.

      • Debra Barton says:

        Yes I’m right there with you. Dx at 50 and it’s been super fast seems to me. Did you start a late on-set group?

      • Leslie says:

        Go for it give big yells. Yes it is unfair . Lots of things are unfair. Who is to say we can not get mad. It’s part of dealing with loss. If you had no reaction then I’d Question your sanity.

  11. JK says:

    Medicare doctors do NOT care about MS or autoimmune- they tell me I am always lying/mentally ill. So sick now I can’t leave the house. They are pill pushing CROOKS$$$$$$$

  12. Tiffany says:

    My 60yr-old husband was prescribed Wellbutrin for mood changes and anger control. Within 2 days he had numbness/tingling/parenthesis from the waist down. Two MRI’s were normal but the after being hospitalized for 1 week, new MRI’s (MS protocol) found lesions on his brain and spine. Spinal fluid tested positive for Oligoclonal bands. The MS neurologist is being cautious diagnosing him with Multiple Sclerosis due to his age. After a treatment of steroids, his symptoms have improved. A follow-up MRI will be done in 3 months. He will be evaluated at the Mayo Clinic in 2 weeks. I know the antidepressant is probably just a coincidence but he’s never had any symptoms prior to this.

  13. Ann Addley says:

    I had mri scans 20 yrs ago in royal London. And wS told cauld be Ms.. Now 40 yrs later I been in hospital. Balance. Fatigue. Eye problems. Had 2 mri 1 cat scan. Now been told I have MS… That nuroglist 20yrs ago new it was. But didn’t say

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