My neuro is starting to lean towards the possibilty of MS with me because of constantly changing updating sx that were originally dx as fibro but are gettiing worse and weirder....as in started in 1995.....with mostly leg pains and some arm...tiredness...

I guess I am just wondering what the MAJOR sx that each of you has that was the deciding factor. I just keep feeling clumsier, have more pain in legs, sudden flare of pain and fatigue in arms last fall, impossible mornings, flares of somedays feeling like legs are dead weights.......but over all if I get enough sleep I can make it without a nap. I also shake real bad if I do too much physical moving around.....there were a few new lesions on my latest mri, and doc hestitantly said well we could do a spinal tap .....but maybe should wait...all dozens of bloodworks are normal.....except right now my D is real low and cortisol level, they think from epidural steroid injections,......I have been on cortef at rather low dose for several months no benefit to me, I hate it! Extreme depression.

Hi, Lailavia, and welcome to NeuroTalk!

In my case, there was no one defining moment/symptom. At 19, I was struck down with a dramatic case of vertigo and hospitalized for 6 weeks. At the end of 6 months, I had resumed the active life of a kid that age.

12 years later, I woke one morning with a numbness/tingling in my pinky's very tip. Within 7 months of that day, I could not feed myself or brush my own teeth. That one lasted 22 months.

I went 6 more years with no problems and it started again with ON and unbelievable fatigue.

I'm almost 45 now, can barely walk 20 steps and depend on a fleet of appliances to accomplish the simplest of tasks.

But, I did just make a whirlwind tour of the west!

Get the spinal tap, a second, third, even fourth opinion, and hope like crazy that it's something else that can be fixed!

From the sounds of it, your doc may be looking for symptoms that pop up and then are gone. Like for me...numbness in 1992 and again in 2002. All the other symptoms I had were kind of vague and could be attributed to other things....
Then there is the MRI.....need those multiple spots suggestive of Mylein disease for that positive diagnosis.
So; they like 2 or more flares separated by time....and the spots on the MRI.
I would ask your doc why: if you seem to have MS symptoms and spots on the MRI....why is he not convinced? Do the lesions look like they could be from something else? These two things alone got me my diagnosis. I never had a spinal tap and blood work was great except for one that suggested inflammation somewhere in the body. (disease was very active at that time)
You need to keep moving forward with this even if this means seeing another doc. ASK: WHAT ARE THE LESIONS YOU HAVE ALL ABOUT? DO THEY CORROSPOND WITH YOUR SYMPTOMS?
Hopefully you can get some answers.

My first OBVIOUS sign was numbness up to my chest, that quickly led to (temporary) paralysis. I had other signs before that, but they were easy enough to ignore. I recovered relatively well, and had nothing major for another 12 yrs.

As karilann said, they want to see two episodes, seperated by time, and a certain size/shape/location of lesions on an MRI. I would ask for a copy of my MRI report (from the hosp or where-ever it was done), and look for wording that might indicate demyelination vs other reasons for lesions.

A spinal tap is NOT necessary, and very invasive, IMHO. I am biased as I had a terrible type with mine (which is quite rare, but a REAL posibility).

Good luck,

Cherie

I have a question about just where are the ms lesions susposed to be???
I have been told I have 10 in my frontal lobes and will be having another new Mri on the 10th to see if there have been any changes.
I have dx with fibromyalgia, however the other stuff that is going on is being checked out. I am at a loss here. Still working, so very worn out. I just want to lay down.
Geri

The frontal lobe is good place for MS, but also for a lot of other diseases. Are you also getting a spinal MRI? Some MS lesions will be there too.

They say that the symptoms you have will confirm some of your lesions, but not necessarily the other ways around.....In other words you can have MS symptoms before any lesions show up on an MRI.

I hear ya about laying down...me too.

finally here it is, the final IMPRESSION: Subtle left parietal and centrum semiovale lesions which may represent a demyelinating process in a patient of this age with other etiiologies such as vasculitis or chronic small vessel eschemic changes: a consideration as well. (apparently the parietal finding has been there since 2003, but the other lesions were new from April 07, or rather, and mri was done then , then this repeat in june 07 for increasing arm fatigue. )The skin biopsy was negative in my legs, though is does say there are some fragmented and segmented parts and to repeat in one year. THE DOC AT HOPKINS DID NOT EVEN TELL ME THAT! (I had ordered the report) He just said your test was negative, sorry I can't help you, blah blah, goodbye. I feel humiliated. Couldn't he have referred me for more tests to another type of doc ,who the Heck is going to help me???? I guess if my own neuro, whom I can't talk to cause he just doesn't talk, he does 5 minute appt....I will now have to find another neuro. Maybe it is just fibro, boy does it hurt! Maybe I stagger around because of my meds, and the brain fog....Now my neuro is good at running the right tests and such, but I will go see him one more time and see if he brings up the "follow up". I guess I am just a freak of nature, I give up. I have cardio tests this week....at least I know what I don't have!!!! Thank you for helping me along with this problem....good luck to all....

Would the new centrum located lesion be any indication of ms more so than the other one? I thought I read that somewhere.

Hi lailavia.....I found this at the MSF site.......

LESION LOCATION:SIGNS/SYMPTOMS:

Cerebrum & Cerebellum:
Balance problems, speech problems, coordination, tremors

Motor nerve tracts:
Muscle weakness, spasticity paralysis, vision problems, bladder, bowel problems

Sensory nerve tract:
Altered sensation, numbness, prickling, burning sensation

It seems like my sx aren't as dramatic as far as numbness and such..except in feet which has been there forever......so I just don't know. Have been fighting a flare of exhaustion this weekend, once again as usual my big plans down the drain. If I have the energy I will pick up the phone I need to check in with neuro soon, I may have to make a decision about changing to someone I can talk to!! Hope you are feeling a bit happier soon! All I do is moan about my problems, I really appreciate everyone here and wish I had more time to be supportive. I am tutoring my 12 grader thru an online high school course this year it is like a full time job I can't keep up with anything now. BY the way my main dx now is fibro. and anxiety, POTS, and my weird morning shakes. And all I want to do lately is sleep, this is just not me.

Peace to all...