Late Onset MS

[Beach Betty]

Thanks everyone for your comments on LOMS (Late Onset MS). My neurologists' PA told me I was to old to get MS and I need counseling.

Wow, TomD, what a very bad situation to be told this! I once had a neuro doc, who was not well versed in MS, who thought everything was cured with Prozac or other mood changing drugs. I told him: Forget. About. It! You do indeed, need to find a doctor, with a medical staff, that knows and has compassion for MS. Age related? I don't think so, haven't read any research that says one can be too old for any disease. How outrageous. Maybe the person who told you this is too old to be caring for patients.

I sincerely hope you will find the right doctor to better able yourself to live with MS. Depending upon the type of MS and your age, there may be a limit to what therapies are available, but #1 drug is compassion and caring. Thank goodness for these blogs, it helps to get some of the horrible treatment dished out and the real world put back in. Good luck to you TomD, speedy help your way soon.

[CindyLWho]

RE: Late Onset MS

I was diagnosed in 2003 (13 years ago). I started Rebif/Interferon subcutaneous injections and had an allergic reaction to it. Hence, I was then placed on Copaxone subcutaneous injections or over one-and-a-half years. After getting five opinions in agreement that what I had did not appear to be MS but was a mystery ... I quit the Copaxone.

My "finally concluded" diagnosis, which is accurate now for Rare/Atypical "Complicated & Intriguing" ... Secondary Progressive MS was officially attained on Wed., Feb. 4, 2015. Yes, the wound is still open. I am age 48.

[TomD]

Sounds Just Like Me

Your story sounds just like mine. I have also been called the million dollar guy (tests..............) and the doctors also call me a mystery patient. Going to see two new neuro's on April 1st to see what is causing my chorea. (uncontrollable movements of my upper body) Oh what fun.

I was diagnosed in 2003 (13 years ago). I started Rebif/Interferon subcutaneous injections and had an allergic reaction to it. Hence, I was then placed on Copaxone subcutaneous injections or over one-and-a-half years. After getting five opinions in agreement that what I had did not appear to be MS but was a mystery ... I quit the Copaxone.

My "finally concluded" diagnosis, which is accurate now for Rare/Atypical "Complicated & Intriguing" ... Secondary Progressive MS was officially attained on Wed., Feb. 4, 2015. Yes, the wound is still open. I am age 48.

[islandbeacher]

Late Onset or Just not Diagnosed until Older?

Your story sounds just like mine. I have also been called the million dollar guy (tests..............) and the doctors also call me a mystery patient. Going to see two new neuro's on April 1st to see what is causing my chorea. (uncontrollable movements of my upper body) Oh what fun.

Tom I am a 64 year old female who was not diagnosed until I had major medical event at age 59. One MRI and i hour later I was told I had MS. I live in the doctor told me I had had M south Georgia but briefly saw a specialist from Jax, Florida. With no family history of MS and nothing unusual in my life to go on. he suddenly asked me a strange question during my first visit. He asked me if there was any chance that I had ever had Bell's Palsy. I suddenly remembered the winter I was 23 and had had half of my face go numb one morning after I had had two bouts of pneumonia. I was treated with B12 shots twice a week for a month and had no lingering problems plus my face was normal. Bingo! The Doc told me that was the onset of MS for me. Then I told him I had had problems at age 32 after my son was born but they went away within a few weeks and no medical person had suspected MS. (They thought I had "bad nerves" after my baby was born.) The Doc explained that no one really has late onset of MS but that symptoms may not be very obvious until later on in life or that no one puts various symptoms together or that smaller communities did not had MRI equipment for many of the years I actually had MS. I was already in secondary progressive stage when diagnosed so of course just take meds for symptoms. est of everything yo you as you go after better treatment - islandbeacher

[Benson]

Diagnosed at 58

I was also diagnosed "late" when I finally went to a neurologist with drop foot, right arm numbness, bladder issues and several vertigo episodes four years earlier. Even though he first told me I was way too old, the MR's confirmed too many lesions to count in my brain and spine. And in the last year I have progressed with more balance, walking, fatigue and pain issues.

So much for Mass General specialists who told me I had arthritis, urinary frequency due to menopause and the vertigo from earaches - no one connected the dots.

[Canary54]

My first neurologist also thought I had "late onset" MS when I was diagnosed at age 52 in 2006. However, after changing neurologists, with the new neurologist taking a more detailed history, I recalled an "episode" the summer of 1977, before I became pregnant with my second child. Episode consisted of vertigo, double vision, balance/gait/slurred speech issues lasted about 3 weeks then completely went away. No MRI's back then, so once the problem resolved, my GP did no further testing. No problems for the next 29 years.....then balance/gait/numbness issues hit again in 2006....and stayed this time. I've only ever had the two relapses, if you can call them that, the one in 1977 and the one in 2006. After no flares/relapses for 5 years, the neurologist diagnosed me as secondary progressive in 2011. I am left with residual problems with walking, balance and gait after the 2006 attack.

So apparently my MS 'percolated' for 29 years...........and I am thankful for those 29 years to raise my four children without an awareness of this disease lurking in the background. MS takes such a different path for each of us!!