Late-Onset MS Patients More Likely to Progress Quickly to Disability, Study Says
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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.”
Cheryl Stroyick
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.
Tim Bossie
We are sorry to hear this Cheryl. Going from independent to having to rely on others is such a hard challenge for anyone.
ROBERT
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.????
Bodil Karlström
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?
David Pepe
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
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
Hello. I don’t know if you will see this or if you recall this old post. I have some questions please.
Thanks
Steve Slobodzian
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
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.
CDM
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
could vitamin B12 deficiency be her problem? look at Pernicious Anemia Society's site for symptoms and information.
Elizabeth DiPietri
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.
Bruce
I am also 71. I am close to a positive MS diagnosis. I have 2 very faint bands on the Olig. band test. I have strong tingling in both elbows and hands (pinkies and ring fingers only) MRIs coming up for head and spine to find lesions. No other symptoms. Still exercising up to 36 minutes.
Bob McKown
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
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
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.
Rhonda Cornelison
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
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
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 !
Tricia
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.
Richard speer
Are there any positive stories concerning late-onset multiple sclerosis all this story seem negative I would like to hear some encouraging stories to
Eleanor
Yes, I so agree with you. My partner, aged 55 was just diagnosed with ms. Looking back we think it might have started about 2-3 years ago. There is so much information out there but not nearly as much about those who develop it later in life. To make matters worse, so much of it is very depressing and surely there must be some positives out there to give some glimmer of hope dealing with such a horrible disease.
Artanis
No, there really isn't much out there that is positive. But that's OK with me because I always prefer reality over feel-good stuff. Late onset MS (which is absolutely NOT what the study in the article says it is) pretty much sucks right out of the gate just like it does when it hits younger. And yes, you hit disability marks (like the EDSS numbers of 4, 6, etc) more quickly. But since you're older at dx, you are likely to hit those milestones at an older age than someone who was dx'd at 30. That's about the only good thing I can think of.
Courtney
I’m waiting to get diagnosed right now. I started having symptoms last month. At first I had electric shock feelings around my neck and in my tongue. Then I slept for 3 days. Then I had a terrible neck tremor that I went to the ER for. Now I’m having trouble walking and for the last 2 days if anything touches me gently my skin gets the horrid disgusting feeling. I see a ms specialist in 3 weeks and I am terribly afraid that I will be so much worse before they even do an MRI. These are my most annoying symptoms. I am a 44 yo woman. I think I have been having symptoms since last year. My eyes would shake quickly then stop. I then had terrible pain in my eyes also had vertigo. Now all this new stuff. I just want help and I wish my doctor didn’t just push me off as being depressed and actually listened when I told him my symptoms. I feel so stuck. I can deal with this but feel like 3 weeks is forever as I’m getting dramatically worse by the day.
Judith landgraf
Ms and anger. Seems to be a connection. All the patients I know are passive aggressive
Donna Runeric
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
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
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.
JK
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$$$$$$$
Tiffany
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.
Ann Addley
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
Terry Power
I was 60 years 6 months old when I was dx 3 years ago. As a man I’ve had a numb head that never goes away. I’ve yet to meet anyone who can relate.Some younger men had the numbness in the head early on but it went away. If you know of anyone similar please respond.
camie
I recently lost control of my legs for 2 hours but they work now although they have in the past and now feel very tired. I walk very slowly even when i try to walk faster. I have also noticed I am dizzy a lot (feel altered) and my temper is worse. I have other autoimmune stuff. Gout, Arthritis, psoriasis which have developed in the last 10 years I also have what I thought was painful cramps in my ribcage area. The feeling of water running down my leg has been around for years. I am 70 years old. I am afraid of MS. I have an appointment with a rheumatologist because my gout is chronic. should I be seeing a neurologist instead?
camie
It would be really nice if someone could leave a comment for my post. Just say you are nuts no MS symptoms here. Or sounds suspicious you should get this checked out. Can an MS attack that leaves you unable to walk only last 2 hours? I did not tell my rheumatologist about this because I thought it did not mean anything anyway. I am 70 yrs old if hat matters.
Artanis
Good grief. Pieces like this are so annoying and misleading. Since when did "late onset" become over 40?? Late onset is defined in the vast majority of medical literature that I have read, as over 50, not 40. One study in Kuwait is hardly sufficient to redefine the term. So right off the bat we're not really talking about LOMS, we're talking plain old adult onset MS or AOMS. But even so, there is nothing here that is new, with titles all over Pubmed like, "Older Age at Multiple Sclerosis Onset Is an Independent Factor of Poor Prognosis: A Population-Based Cohort Study." Basically, the fact that the older you are at diagnosis, the faster you will progress in disability, has long been known.
Unlike the Kuwaiti study with just 99 patients' info, the following huge cohort study - using 1844 patients' data - is worth your time to read. It is from 2006 and is far far better than the study referenced in the article above.
Age at disability milestones in multiple sclerosis
https://academic.oup.com/brain/article/129/3/595/390809
What to read: The abstract if nothing else. The intro is excellent, Figure 3 is a lovely visual that is easy to understand, and the Discussion section should be of interest, and says (among other things) this:
"The originality of our study lies in its being the first ever to show that age at assignment of disability landmarks is not substantially influenced by the type of the initial course of multiple sclerosis, be it exacerbating-remitting or progressive. This is further evidence that neurological relapses, whenever they may occur, have only a limited influence on the accumulation of irreversible disability in the long-term (Confavreux et al., 2000, 2003). This age-dependency of the accumulation of irreversible disability, whatever the initial course of the disease, finds preliminary support in brain imaging studies of patients with multiple sclerosis (Filippi et al., 2001; Kassubek et al., 2003) and in clinico-pathological studies of experimental models of the disease (Smith et al., 1999). However, it would be an oversimplification to consider that accumulation of irreversible disability in multiple sclerosis is strictly age-dependent. ********* As shown in this paper, age at clinical onset of multiple sclerosis is also influential: the younger the onset, the younger the age at assignment of disability milestones. Similarly, the younger the onset, the longer the survival time for converting from an exacerbating-remitting onset of the disease to secondary progression (Vukusic and Confavreux, 2003) and therefore the lower the rate of patients converting per year (S Vulusic and C Confavreux, unpublished personal data). This confirms the complex interaction existing between age at clinical onset of multiple sclerosis and current age, which has already been observed in the Lyon cohort (Confavreux, 1977; Confavreux et al., 1980) and in an Italian study (Trojano et al., 2002). ************"
(************* emphasis mine)
Corrine
I'm 59 years old and currently going through testing for MS. My neurologist (epileptologist) wanted me to have an MRI of the brain and cervical spine, but either when he wrote out the order or one of the girls at the front desk entered it electronically, the cervical spine was left out and I only had of the brain and I have to go back. About a year and a half ago I went to my primary doctor due to increased fatigue and weakness of my legs, especially the left one. My doctor ordered lab work, and although my B-12 was normal, it was on the low end of normal. I also started having where my body really needed sleep during the day and I would sleep 5-6 hours straight. Now, these symptoms might seem strange and even a bit funny, but I want to share them in order to see if anyone else has experienced them... I will be laying down in bed trying to go to sleep, and suddenly my arm will just fly up and I smack myself in the head or the face! I also have at times where I will suddenly "yelp" out of nowhere! Those 2 things haven't happened in awhile, though. But here's the thing that has really drastically progressed... Every 4-5 days or so, my body completely shuts down and I sleep 24+ hours straight! I have no control over it whatsoever! Once that subsides, my body gradually comes back to "normal." It typically takes about 12 hours after I finally wake up. The MRI supposedly didn't show MS and was diagnosed as "migraine or or microvascular ischemia" (that's exactly what they said in the report! It's either one or the other). I'm eager to have the cervical spine done because I'm sure, because of my age and how common it is to misdiagnose MS for these other conditions, that I do indeed have MS. To go from never needing to take a nap, to sleeping 5-6 hours during the day, to completely shutting down and sleeping 24+ hours, unable to function at all, all within a year and a half's time... I go for B-12 injections and just had more labs drawn about 10 days ago, all coming back normal... I just want a proper dx so I can start tx.
Has anyone else experienced the symptoms I have? They're strange, but they do occur. I do have other common symptoms of MS that I won't bother listing