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What were your initial symptoms?

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Multiple Sclerosis
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Posted 11/24/2006 3:21 PM (GMT 0)
I am currently in diagnosis lala land. Right now they are looking at lupus. The neurologist ruled out MS based on a negative brain MRI and EMG study. I wonder though - these studies were done only a week after I started having symptoms of extreme weakness, dizzyness, and fatigue. Would lesions start showing up at that point? Should I have requested a spinal MRI? Should they have ordered an LP even though the other tests were negative. What is your experience with initial symptoms and diagnositic studies? How long did it take you to be diagnosed? Were there any other lab studies that clued your doctor in to investigate further - or was it just symptomology? All of these diseases are very frustrating since they don't have one definitive test.
Posted 11/24/2006 5:21 PM (GMT 0)
Hi, welcome to Limboland. I've been in Limbo since May. I've had MRIs of my brain and spine, all which are negative (though the spinal MRIs were very bad quality and blurry.) I've had EVPs, all of which were normal except for the one of my left leg. I had an LP last month, it was negative too. In January (unless they can fit me in sooner), I'm having an EMG on my arms and legs.

It's so frustrating to know that something is wrong, but nothing shows up on clinical tests, isn't it. My own husband thinks I'm nuts or faking symptoms or something. (As if! Some of these symptoms are just too bizzare for me to dream up!)

Anyway, just wanted you to know that you're not alone. From what I've read here and on other sites, diagnosing MS can be a long ordeal, and there are many other conditions which can mimic the symptoms. And even if it IS MS, sometimes the signs don't show up on MRIs or other tests for years.

I hope you get some answers to this puzzle soon. Until then, we can hang out in Limboland together.
Posted 11/24/2006 6:35 PM (GMT 0)
Hey Gloryroad

Welcome to the board! I hope u'll feel comfortable asking anything u need and know we'll all do what we can to answer u'r questions/concerns to our best ability and extent of our experiences.

There are a lot of tests run to rule out many things when considering MS as a possible dx. As u've already said, there isn't any one test to rule it in. I've prob had all the blood work most often ordered, but can't tell u the types/names of tests done. I'm sure others will be along very soon to help with that, but know there are many. In testing for Lupus i'm sure u were also cross tested for many of the same things. In addition to the blood work usually done, there are evoked potentials which measure the speed and effenciency that nerve impules reach the brain, eye and ear. Also, as u mentioned, MRI's. Usually done of the brain and spine and sometimes of the lower and mid spine if the doc feels needed. Usually as a last resort a lumbar puncture (spinal tap) will be performed. This is not the test of choice to begin with, but rather is used most often to confirm other test results that give reason to suspect/believe ms is the culprit. Of course there are the in-office exam tests done; like heel to toe walking, strength testing by pushing against the docs hand as hard as u can, standing with u'r eyes closed to see how long u can stay up and straight, reflex tests and many more that i can't remember. I'm sure i'm forgetting many...one of the wonders of this nice condition. By the way, i'm in limbo as well. I've been here...unsure of what's going on with my body...since Feb of this year. Limbo can last a long time or it may not last any time at all. I hope and pray u'r not in limbo for too long and will get some answers soon. U'r question about lesions showing up so soon after symptoms starting...well yes and no. I had my mri's pretty soon after my symptoms first began and didn't have any lesions. That could mean i'll never have any lesion and don't have ms or it could mean that it's just so early in the disease that they aren't showing up yet. U should follow u'r docs lead for now and see where he's going and let him do his job, but in the end if u'r still left with no answers and u know of things that can be done...spinal mri, lumbar puncture...then by all means ask for that if it'd put u'r mind at ease. I've learned tho that even when u don't see any answers u can still trust that u'r doc's doing all he can do at the time, but if at any time u feel unsure or that u'r not being given due care and effort to resolve this, u should act. I hope i haven't missed too much, but i know i have missed some. Others will be along to help with info as well. Again, welcome to the board and i hope u get some answers very soon.

rhonda
Posted 11/26/2006 6:50 AM (GMT 0)
Hi Gloryroad,

In my case, my leg went numb, then my arm.. had MRI a couple weeks later and was diagnosed that day as I had multiple lesions in my brain and spine.

I wish you the best

Shar

Posted 12/19/2006 4:44 PM (GMT 0)

Back in APril I started with the MS hug, periodic numbness and tingling in my legs, and all kinds of weird electrical activity up and down my legs. I'd never had any problems prior to this. I've had CTscans, MRIs of my entire spine, and more blood work than I care to think about. Had a lumbar puncture on Monday.  I have a lesion on T8-10 and small lesions on my brain. The lesions on my brain could be scarring from migraines. THe neurologist said he would say transverse myelitis IF I hadn't started having numbness in hands and face. Eight months and still no firm diagnosis. It has been a long, strange trip. Glad to find this forum!

Vickie - Michigan

Live simply, Love generously,

Care deeply,Speak kindly,

Leave the rest to God

Posted 12/19/2006 5:40 PM (GMT 0)

madlou said...

Back in APril I started with the MS hug, periodic numbness and tingling in my legs, and all kinds of weird electrical activity up and down my legs. I'd never had any problems prior to this. I've had CTscans, MRIs of my entire spine, and more blood work than I care to think about. Had a lumbar puncture on Monday.  I have a lesion on T8-10 and small lesions on my brain. The lesions on my brain could be scarring from migraines. THe neurologist said he would say transverse myelitis IF I hadn't started having numbness in hands and face. Eight months and still no firm diagnosis. It has been a long, strange trip. Glad to find this forum!

Vickie - Michigan

Live simply, Love generously,

Care deeply,Speak kindly,

Leave the rest to God

Have you gotten the results of your lumbar puncture yet?  That might be something that will give your neuro a definitive answer.  Transverse myelitis is one of those disorders that mimics MS, and as you noted, the lesions could have come from migraines, but if there are o-bands in the spinal fluid, that might clinch the diagnosis for you.  Not knowing exactly what is wrong has to be very frustrating.
Posted 12/21/2006 8:03 PM (GMT 0)
multiple, of course, means alot. sclerosis means scarring.  just think if you cut your hand you have a cut- it takes a while to form a scar.  the scar in ms land is those white spots/liasons that the mri picks up. good luck.

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