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.

I'm glad you will rethink hanging around here....who else is going to figure this out WITH me? The relief of being told NO MS is great, but then after you absorb it, you wonder WTF???? It must be stress, must be chantix, must be the man in the moon.....

I'm not in limbo anymore...I'm just searching....I fought limbo for weeks, sucumbed to it, and was all ready to be 'told'....that didn't happen...so I'm going back to the beginning, with lots of tests behind me...a new perspective, and going to cross that list off....as long as I have insurance :D

HUGS!:hug:

i'm glad you're staying with us therese,

if you have a flare in your sx's again and your dr doesn't know what's wrong please consider yet another opinion.

i know how hard it is to dr hop, and you don't want an MS dx, but with 11 lesions...just makes me wonder what's going on too.

take care

Just thought I would add that I was just diagnosed last spring at the age of 50 with first flare. Only prior symptom was some tingling/going to sleep feeling in one foot.

The neurologist who initially all but told me I had MS included in his list of reasons that I was "the right age." I was 43 at the time.

I hadn't had previous symptoms except some short dizzy spells in the 1980s, but those could have been migraines or who knows what.

Nancy T.

I agree! 11 lesions are a bit too many to just sweep away Therese. There has to be a reason for these. We all know that lesions can be caused by other things, but let's face it, we're talking about a small number of lesions.....not 11!


I agree RW. Lesions on MRIs are abnormal, and abnormal MRIs need further investigation. I'm rather more than a bit sceptic about your Neuro dismissing you over thisThav1. Hang in here a bit longer with us if you can. Maybe you'll read something else on here, that makes it all a lot clearer. :grouphug:

I was diagnosed just shy of my sixty first birthday..... Had LP, MRI and various neurological test to confirm.
It is my understanding that I either had MS for a long time and was not aware of it or I had late onset MS.
Soooo.....

I was 42 and it was reallyonly in hindsight that i could see that i had had mild symptoms in the past but they were all either so vague that they did not seem to make much sense eg a small patch of numbness on the right side of my face that lasted a few days, or they were the kind of thing that could be explained in other ways eg bladder weakness in an overweight older female, numbness in my right hand at time ( had been blamed in carpal tunnel which has since been excluded). I had had one period of illness that put me off work for quite a while (severe fatigue was the major problem) they just excluded infection etc and said eventually that it had features of an auto immune issue- that was only about a year before i was actually dx. My dx came after developing severe vertigo/balance problems. On dx i was told that i had probably had MS for at least a decade because of the number and pattern of lesions present- thats when i was told these other issues were most likely to be MS too. The one thing i have learnt about this disease is that while there may be more common patterns, there is no hard and fast rules and has already been pointed out, they say that most people are dx between the ages of 19 and 40 , they used to say it was only an adults disease, sadly they know that is not the truth now and that is does actually affect kids too

I too was dx'd in my 40's. hopefully you don't have MS but I would wait until all the tests come back.

My thoughts and prayers go out to you!. Good luck.:hug:

It took a long time for me to be diagnosed. My lp was negative and I have no c-spine lesions. I'm really glad to see that they think you don't have MS. I was given a lot of false hope over the years.:(

I'm glad to see you're sticking around.:D:D

I agree with everyone else about the age thing. They're starting to see that it can strike at anytime. I had symptoms that I didn't connect with MS for a long time.:rolleyes: I was diagnosed at 41.

Good luck and my thoughts are with you:):)!

I haven't been dismissed. They are doing more blood work,they did tell me to return in 8 wks after the b 12 shots. He did say that they are concerned about the lesions,what do lesions have to do with B-12 deficiencies?? They are still in the sorting me out process. And yes by the time the afternoon was over I was in the WTF mode..
I have to say, I feel horrible and in pain and numb and just feel like I should be in the hospital . It's crazy to feel this awful for months and have no treatment,( well the b-12 shots will start Friday). Thanks friends.

Maybe I should ask to be referred to the Rheumatologists...Thanks.

Many many :hug::hug::hug::hug::hug::hug::hug::grouphug: