Ms Specialist Appt.
 

I had the appt. with the MS DR. today. He doesn't feel it is MS because I'm 47 and don't have a history of symptoms before now. I do have 11 lesions and the elevated IGG index but no O bands. My B-12 is down a little so we are going to start on B-12 injections. He thinks it is possible that it is one of 4 or 5 other diseases but quite frankly I couldn't tell you what he said at this point.
We are doing another round of blood work,(lupus,lyme have already been ruled out). So...today I celebrate no MS and bid you all a fond farewell.Thanks for your support.

wait a minute therese,

don't go yet.
your dr is still working you up.
i know he's an ms specialist...but i was dx'd when i was 53.

what did he attribute the 11 lesions to?

he didn't. just said they weren't in the location you would expect to find them and none are present in the spine. I don't know what to think. One Dr. said the b-12 levels weren't a concern in the 300's the MS guy said they might be the issue even though he said " the lesions are a cause for concern".
did you have symptoms before 50? I can't recall having numbness before this fall but have had two other spells of vertigo and migraines. I don't care what they want to lable it as long as they fix it.

i did have sx's but didn't recognize it.
when i got dx'd with MS i then could think back and see that it could have been the MS. my neuro said i'd probably had it for some time (about 5-10 yrs).

i was very heat intolerant.
i tired easily.
my legs were getting weaker.

but i was an RN working long days and walking a lot so i just thought it was my work, and my weight.

silly me.
give it a bit more time.
surely you will see this dr again. get him to pin down this lesion thing.
was your neuro exam normal or abnormal?

your next appt you might think about bringing a trusted friend and/or family member. they can be a 2nd set of ears for you.

and, write down Q's you think of.
i hope you find answers soon.

Just a note to say I was told that too. At 43 I'm too old to be dx'ed with MS. At this point I believe the Neuro....but I've still got some 'splaining to do!!! <grin>

I enjoy chatting with you...would love to see you stick around with me and maybe together we'll figure this all out???

I was 44 when I was diagnosed. I had a major severe bout of ON. Previous to this I hadn't had anything that was even remotely associated with MS symptoms.

No one is too old or too young to be diagnosed with MS. Regardless of whether your lesions are "typical" MS lesion is not the point. The point is that you have an abnormal MRI with lesions. Lesions are ABNORMAL.

MRI can also miss lesions in the spinal area. Many people have had clean MRIs and later found that with a stronger MRI machine, the lesions are present in the spinal MRI.

I'm not trying to scare you or override what your neuro said, but you need to know all the facts.

Please let us know how it goes, and good luck! I hope you get answers regardless of what it turns out to be!!

Theresa, I hope it's not MS, but Judy has some valid questions.

And anyone who tells you you're too old to be dxd ... well, my neuro told me he dxd an 87 year old!!!

It's been nice having you around. Hope you'll come see us now and then. Good luck to you!

This is soooo true.

When I was dx'd (in the dark ages :p) the average age for MS was between the ages of 20 and 40. This no longer holds true. Children and those well over 40 are being dx'd as well as every age in between.

Theresa, I'm very glad your neuro said it's not MS but if it was me (and it's not) I would get a second opinion just to be sure. I am concerned the neuro feels your too old for MS - he sounds like a neuro who hasn't kept up with current information. Your neuro might be right but then again he might be mistaken - just my personal opinion.

It can't be MS because you're 47? I was two mos shy of my 47th b-day when I got my dx, and basically had no symptoms. My pcp was just getting suspicious of some things and because of my migraines suggested I see a neuro.

How were your reflexes? Can you kick a field goal? That was the first indicator my neuro saw. My reflexes in my legs are so fast she has to be careful I don't kick her in the teeth! That and something called "clonus" in my ankle joints. I'm still not clear on what that is. I have no lesions in my spine and only 4 in my brain. Technically, the neuro and the MS specialist labeled it "probable MS", but I'm already either progressing or having a flare.

As much as you might want to, don't take the info with a sigh of relief and run. (I know of one woman dx with MS for 10 years, she was experiencing a major flare, went to see the local "specialist" and he said since he couldn't "smell it" on her he said she didn't have MS.) Even with good news, I'd get a second opinion and pin down those 4 or 5 other illnesses that could cause lesions in the brain!

Good luck and come back to let us know how you're doing.

Thanks for all the replies. I had very mixed feelings about this appt today.First the Dr. ran late due to weather and rescheduled me for later in the morning and then I felt rushed even though we spent a half hour together and felt he had made up his mind before I got there. We'll see what we'll see. The symptoms have started to decrease a bit but they did last week too and then hit me hard again. I reckon if they recede only to flare at a later date we'll know better. I like everyone else here do not want to have MS, I just want answers. I'll keep you posted. Thanks again.