Not me, but I met three patients at the MS clinic the last time I went there. They said that they had either not been diagnosed until after 60 or they had ignored the symptoms until they got bad enough to checkout. It would, in my opinion, be difficult to ascertain actual late onset for some people if you do a hindsight review of their life prior to their diagnosis.
I'm going along that route now, I'm 56 and only just starting all the testing.
When I think about it though, I've had the numbness and pins and needles in my hands and legs for as long as I can remember, but I never paid much attention to it. Ignorance on my part, but I never knew that those symptoms could be a sign of MS, I've never been one to worry unduly about my health. Now I have all sorts wrong, I think there's a lesson somewhere there LOL
I had the peripheral neuropathy for months before being diagnosed (after the neurologist saw my latest MRI). The lumbar puncture was inconclusive though. Symptoms disappeared slowly but are now coming back. So it seems to be the relapse-remitting type - a 'wait and see'. The PN was so bad I couldn't walk. Numbness, tingling, pins and needles over all parts of body which led to pain, itching, burning etc. A strange new symptom is a feeling of icy water around my ankles. Headaches, forgetfulness....and I had a few very bad bouts of vertigo which hospitalised me 2 years ago. Retinal tears is another thing I have experienced. The right eye has had 3 operations and now the left is acting up. I believe there's a connection... I wonder if anyone else with MS has had problems with retinal detachment? There is no history of MS in my family. However, my niece has Guillain Barre syndrome, my son has Bipolar disorder.... I've read of connections, but I read too much on the internet.
True....thanks for the reply and info on people with late-onset MS. My doctor said it usually takes a milder form but I read somewhere on the internet that it can be more aggressive eventually and progress at an ever-increasing rate. Puzzling ..... and MS is different with everyone, apparently.
Darcy, first of all, late onset refers to the age that it is diagnosed, and true, being diagnosed after 55 would be conisdered late onset; however, no two cases of MS are alike for anyone! There are four classifications of MS...relapsing/remitting (the most popular) primary progressive, secondary progressive and Progressive Relapsing MS.....any one of these can be diagnosed at any time or age- and there is no rhyme or reason to who progresses to the next or a different stage. Many people do not progress at all, ever.
SO no matter what age you get dx with MS, it cant possibly change your odds of how fast it will progress- unless you are diagnosed with a stage of MS which, quite honestly, would have included so many symptoms by now it would have been hard to ignore them thus far....
Its easy to ignore Relapsing/remitting symtoms..almost all of us here can say that "looking back we remember......." but if you had a form of MS which included never-ending progression, by now, you would be seeing many signs that something isnt right.
Try not to put age as a factor into this,and remember that each of us is diferernt, do not compare yourself to anyone you meet, read about or hear about...its okay to compare symtoms, tests and even meds- but the disease itself is an individualized as a snowflake!
I was dx this March at the age of 55. Looking back I've probably had it a long time but finally got the dx. My biggest symptom was vertigo. Had it for about 5 years. I have been on Rebif since May and seem to be doing much better.
Hi momma, you proved my point, I think. Because you are on Rebif, I can only assume you were dx with Relapsing /Remitting MS, since that is all it is primarily used for..and due to your age group (sorry!) considering yourself diagnosed as late onset would be reasonable. The fact that you are doing better since May doesnt surprise me either. I love Rebif! I feel 100x better since being on it, myself. Im glad to hear its working for you as well. Darcy, I hope that you see that no matter how old you are (or how young) MS is manageble! BTW, I was 39 when I was dx....
I was 55 at diagnosis, and the doc thinks looking at the MRIs that I maY have had it for 20 years. And looking back I had mild symptoms, but nothing to even make me think about going to a doc. When I started falling just about everyday, I made the rounds and had a diagnosis within a week which is pretty rare. But I walked like a penguin to avoid falling, had "numerous" brain lesions, and spinal tap came out positive. I cn walk, but with terrible balance and horrible back pain from an old injury that squashed my sacroiliac region so badly that neurologists have to count from the top of the spine to find L4 (they hope). Wheelchair keeps the walking pain away, and keeps me from falling--though I did manage to fall with the wheelchair. Took a running start at a slightly too-high doorsill. Front part of wheels, no problem, but the back stuck and I went flying out of the chair headfirst into the laundry. No one home, natch, so I spent 1/2 hour disentangling myself from the wheelchair, and another 1/2 hour resting in the laundry until I had the strength to haul myself up. THEN someone came home. It really was kind of funny