This Is MS Multiple Sclerosis Community: Knowledge & Support

I'm looking for information. I've been going through testing for 6 weeks, all MRI's negative for lesions and blood work negative, but doc is still suspecting MS and he is sending me to a neuro in a larger city to get his advice. Here is what I am experiencing.

6 Weeks ago I woke up and my pelvis was numb. Completely numb. Over the last 6 weeks it has spread through my torso up to chest level although the numbness is not as numb as my pelvis. More of a weak sensory issue and it has now spread into my back rear end area. I have complete motor control and no limbs are affected. MRI's show some disc damage but it is very low L5 and S1 so it would not have anything to do with my torso. Weird I know, but the doc said it's possible to have MS and not have any positive tests.

Has anyone here ever been diagnosed and had clean blood work and clean MRIs???

Thanks in advance for any advice!!

Wendy

Have you had any nerve transmission tests or evoked potential exams? I originally was diagnosed with a condition called CIDP (Chronic Inflamatory Demylinating Peripheral Neuropathy) which is basically where the peripheral nerves become demylinated, instead of the central nervous system; and therefore people with CIDP would not show up on an MRI. But there are a lot more peripheral demylinating nerve conditions.

Just a thought, and maybe you could ask why they do not think it is CIDP; to get the conversation started, so to speak.

hey there, i think the neuro will have a better idea. my family doc never said boo about what she thought it was, she just listened to what i said, asked me a few questions, ran a couple quick sensory tests, and got me a referral to a neurologist. when i got to the neurologist he was a peripheral guy. not that i really knew what that meant. he ran a bunch of tests without saying much about what he was doing. at the end, he said it's ms, and referred me to the ms clinic for a confirmation of his diagnosis. but, at least he spent a fair amount of time looking for peripheral sources of the problem first. if i hadn't had lesions all over my spine and brain mris, i suspect he would have taken plenty of additional time with peripheral investigations. the big city neuro could turn out to be a good resource for you.
i imagine my family doc did think ms. i'm glad she didn't say so, in case it had turned out to be something completely different once the specialists had a look at it.

_________________
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Hi Wendy, waking up numb like that and staying numb sounds terrifying, but bear in mind that MS almost always comes on gradually.

Do you ride a bike? I have heard of cycling injuries from the saddle (especially racing saddles) can cause sudden numbness like this, due to poor road surface.


gainsbourg

I may be a rare case but I had 8 negative brain MRI's and 3 negative spine MRI's over a period of 13 years of having symptoms. It wasn't until I had 3 bigger attacks that my MRI's went from negative to positive plus my LP went form negative to positive (I had 3 of those over the years too) All my other tests VEP's/SEP's etc were and are normal.
I have been Dx with definite MS now but during the 13 years every Dr assured me it was not MS.

Lx

Yes of course you are right - attacks can be very acute, but the disease itself develops gradually and unnoticed in the background before major symptoms show. Some research suggests that this stage goes back many years. This is why MS was known as 'creeping paralysis' until the 1940's.

In retrospect many people look back and realise that they have been experiencing various tell tale minor symptoms of MS without realising what was causing them.

In the pre 1980s days before MRI many MS patients were found to have no lesions on autopsy. Those people may well go undiagnosed now because since MRI, neurologists feel they have to find lesions to make a diagnosis (otherwise they'd need to give MS a different name)- maybe they should go back to calling it 'creeping paralysis'!


gainsbourg

I'm not so sure you are such a rare case. A doctor once told me that since the introduction of MRIs there has been a growing group of people with classic MS symptoms who suffer tremendously for years with fatigue, partial disability, numbness, optical problems etc. yet receive no diagnosis. As a result they get no understanding, sympathy or support from friends, work and family (who may even disbelieve they are genuinely ill). They are refused an MS diagnosis, due to the fact that no visible lesions are seen on MRI.

Before the 1980's (and the widespread advent of disability allowances) diagnosis was usually made from taking into account the symptoms being experienced. This seems to make sense, especially since the recent discoveries that focal lesions are merely one aspect of the nerve degeneration and dysfunction in a disease that should no longer be called "multiple sclerosis".

Sadly for this unfortunate 'undiagnosed group' their disabilities and hardship are sometimes worse than many of those who officially have MS (many of whom can still jog, drive and live normal lives).

Also, a surprising number of healthy people develop small lesions in the white matter anyway (especially after the age of 50!)

So Wendy, maybe you will have to wait till then.


gains

Hi Gains,
It was really hard for me to be told over and over again that there was nothing wrong and that it was impossible for me to have the symptoms I was describing... When the illness ME/CFS was discovered a couple of years after I first got ill I was told it was probably that (although I always knew deep down that it was MS).

I had seen about 6 neurologists and many many other ologists each as clueless as the last!!

L

Thanks guys for the input. I will mention the CIDPN to my neuro when I get in to see him. Also I have not had nerve conduction studies yet, this was mentioned as something they most likely will do once I get in to see the neuro in the larger city. Someone mentioned having previous episodes in the past, My right shoulder blade about 6 years ago went numb and the feeling has never returned with no injury and I have had other weird numb things with my arms throught the years (tingling spotty numbness that comes and goes) but associated them to too much time on the computer as I have a desk job. I sure am hoping it's not MS, but reading this forums has been a really good eye opener for me that what I am dealing with right now is so minor to so many of you, it helps me keep things in perpective!

Thanks, Wendy