late onset??

[bikercolleen]

So, because of my symptoms and lesions, etc... I started reading up on all things MS (like most people, I guess)...

It seems my random clumps of symptoms started a while ago, but didn't have neuro tests until I was 49/50.... had a few "episodes" about 6 months apart of vertigo, depression, fatigue, pain and numbness.  

I just had a second MRI 2 months ago (again with multiple lesions) and I will be 52 in January.
My blood tests were positive for Epstein Barr, and anti-CCP and at one point, the Docs thought I had rheumatoid arthritis until they MRI'd my hands and didn't see the joint damage.

So... I am just not sure what to think (having a hard time thinking)... I am SO tired, depressed and hate to leave the house.  Having some bad headaches.  Severe shoulder and neck pain.  Bad right foot cramps.  Sometimes I walk a little weird.

Is all this my imagination? Has anyone here been diagnosed after 50 and if so, how did they tell if your lesions were MS vs. "age related changes"...

Thanks for letting me think out loud....

[bikercolleen]

Hi Laura - I'm at Ft Bragg- a fairly large hospital... and I'm active duty.  

They did x-rays of my hands & feet, and MRIs of my hands.  My ana is "higher" than normal and my anti CCP was "weak positive" - I was told since I also have HepC, it could all be from that, but my GP doesn't think so, and neither does my hepatologist.  My liver inflammation is mild, no cirrhosis, and my blood work (for that) is almost normal.

My son was diagnosed with RA and they didn't MRI his hands.  He is also active duty, but near Chicago.

I do have some arthritis, and some spine problems... I guess that could be causing the pain in my shoulder.  It is just so weird.  Tonight, one hand was cold, and the other one wasn't. I made some hot chocolate just to hold the cup and warm up!

Thanks for the support - you guys are awesome!

[Lulu54]

Military?  That puts you in a different category completely.  Are you active duty or a dependent?  Either way, you are pretty much stuck with TriCare approved docs and I hope you are at an installation with a good medical facility.  If you don't get some answers as to what is wrong, please see if you can go to an outside neuro on the economy for a consult.  

The bad headaches, neck and shoulder pains could be caused by arthritis. It worries me that they did x-rays to test for rheumatoid arthritis only of your hands and not other joints that could be affected. What did your blood tests show?  

Good luck with the LP - and let us know how it goes.  ~Laura

[bikercolleen]

Thanks... it does appear I fit the criteria... there are some other weird things that happen, like if I try to lay on the couch (on my side) and watch TV, I have double vision - but not if I sit up.  Happens if I lay on my left or right.  

I know I have something autoimmune due to my bloodwork.

I think the lesions that were on my first MRI were 2 large ones in the frontal lobe (supposedly not typical MS pattern)... that was early in 2012 - now, 18 months later, I have multiple lesions spread through my frontal lobes... no mention of the large ones (they were both over 6mm.)

Not thrilled over having the lumbar puncture done... but since I'm military, it seems there is a different agenda... though the docs I have seen so far, seem pretty decent.

[kwarendorf]

Hi Colleen -

If you had lesions in your second MRI, that weren't in the first, It would be suggestive of MS. Suggestive being the operative word :-) And if this is true you will have satisfied one part of the MacDonald Criteria, dissemination in time. If the new lesions were in a new location then you will have checked of an additional MacDonald box, dissemination in space.

There are a lot of things that can cause lesions. This includes migraines, even if they're rare.

The age thing is not really a factor. I was diagnosed at 50. Like many of us diagnosed later in life, I had been chasing a bunch of different symptoms independently. It never dawned on me, or my treating physicians, that they were all connected by MS :-) When I was diagnosed we connected many dots along my symptom time line. It turns out that I'd had MS for about 20 years. As such, and based on neuro exam and test results, I was initially DX'd with SPMS.

So yes, you can be DX'd at the apex of the age curve :-)

Kyle

[Pamellla62]

I was diagnosed the day before I turned 51. I too had multiple lesions. I had possible MS for over eight years.

I started having more and more symptoms and my PCP forced me to go see a Neuro. He didn't just look at the MRI. He put also went with all the symptoms too which were getting worse. Also, he did all the usual tests except for the lumbar puncture. He felt it want necessary and I was very relieved. I had had one years before and it was not a pleasant experience.

Not everything is your imagination. Keep on pursuing this until you get some answers. Not everything is age related and you obviously have something going on.

We are not old by any stretch of the imagination even though it may feel like that at times.