Need to know early signs of MS

[asisenhart]

I would like someone to respond to me that has MS...what were your early signs/symptoms? I am extremely curious and scared about my condition....thanks for your help!

[mspeaches]

Hello to all I am new here. I recently had a MRI that came back as my Neurologist states "all clear". My symptoms started in 2001 with numbness on the left side of my face and never really went back to normal. On and off I had severe twitches in my face that would twist the whole left side of my face. Now I have trigeminal neuralgia and given tegretol. I am having jumping in my fingers but nothing in my legs. I have had several lumbar punctures and both are "clean". I am not sure what to think. The things that scare me the most is the "cloudy thinking" the jumping in my fingers and the trigeminal neuralgia. I also have an over production of spinal fluid, that was the original reason for my spinal taps so not sure what that is about. I would appreiciate anyone commenting that can relate. Thanks so much.

[Annie62]

Good luck with your lumbar puncture in Philadelphia.  I hope you don't have MS but if you do I hope they can definitively diagnose you this time.  If you have it it is better to know so you can finally deal with it as best you can and so you can treat it as well (at least that is the way I feel).

I have never had evoked potentials but I have read they are not painful.  (I was actually referring to the LP I had done back in '86 when I volunteered for research when I said I had a horrific headache, but I probably needed to lie flat longer than I did.)  If you follow doctor's orders it will probably go quite well for you with minimal pain experienced.    

Best of luck to everyone pursuing a dx.

[asisenhart]

Thanks to everyone for all of the info! Your input is appreciated! It is a relief to know others understand....to share symptoms and signs w/ each other helps w/ the battle for everyone! Good luck to all of you!

[kitlyn]

HI I cannot respond to all your symptoms , but  i have had a recent and sudden bout w head pressure, weakness in rt eye rt sided weakness, for since August 2006. It came on very suddenly . I have had two MRI's one w contrast one wout ,and they showed two 1cm spots on frontal lobe,,being tested for MS now, seeing specialist in Philly. Have had evoked potentials and it wa snothing ,,just shocks ,,in arm. Now have to go for lumba punture . I have heard you can still have MS wout the spots presnt on MRI. Continue to pursue that. Good luck. It seems like a long process. I also have the weakness in my jaw. Not sure if thats characteristic of MS..sure feels it ..Feel better K

[Annie62]

I read in another post that you were dxd with MS with negative MRIs but that it showed up in your spinal fluid on lumbar puncture and that is how you got dxd, and that the lesions didn't start showing up until some time later.  If you read this post, can you tell me how long after the onset of your MS symptoms it was before lesions started to show up on either brain or C-spine MRI?  I have many symptoms consistent with MS but my symptoms either started in '98, '94 or possibly even back in '90 (not sure if earlier stuff is related, but could be), but my brain and C-spine MRIs were negative as of '02 and '04 respectively.  Have you heard of anyone with MS having negative MRIs 4, 8 or even possibly 12 years after onset of first symptoms?  I'm sure sultry skies would like to know this as well.  Thanks.

[young at heart]

My lesions did not appear until 2 years later.
MRI's are not the only diagnostic tool to determine if one has MS or not.Neuro's use this as a gold standard today.
5% of the people with MS may never have lesions.My diagnosis came after 2 LP's which  both came back with high elevated myelin basic protein.My body was attacking itself.I have occipital lesion visible on a MRI.My visual evoked potential came back with lesions in the retrobublar chismatic area,samotosensory evoked potential came back detecting spinal tract lesions.Both of these test were done at the cleveland clinic neurology department.I had a recent ENG done to see why my balance is so bad  it came back central causes(lesions either in cerebellum or brain stem)with nystagmus.Common symptom of MS.Micro lesions don't always appear on MRI's.Locally the MRI machines are only telsa 1.5.The higher the telsa rating the better the ability to detect lesions.As machines advance hopefully the ability to detect these lesions will.
Other testing done routinely in a neuro's office will show the possibility of a neurological deficit are,reflexes hyper or hypo,babsinki(stroking of bottom of foot big toe goes up)romberg.Visual-follow the light.
In early stages of MS the body has a natural way of remyelinating the demyelinated lesions.Its not until the body gets tired and loses its abilty to do so that the lesions appear.This can go on for up to 15 years.
I hope this helps,remember stress in any neurological disorder can cause sympoms to get worse.You know your body best,continue the quest for a DX.

[sultryskies]

I am struggling at this time to get a diagnosis....been fighting since Dec.05 and got mri in Sept06...it was clear...but that means not sooo much from all that I have read...I believe I have Ms and have had neumerous symptoms...I may ot but you may have experienced something of these:  optic neuritis (1992), depression, numbeness in hands, feet, tight tight tight legs..could not bend without exhaustion, twitching, buckling, enlarged right pupil(same one with ON),tremors, "pulling" to the left/right when I walk, stutter, tremors, knees buckling on stairs, muscle pops, zings, etc...I know there are more but I also suffer memory problems so....hahahaha...list your symtoms...see what you get back....you know your body more than anyone and if you are att is site you will find some sort of answer you need...good luck

[Annie62]

Thank you both for posting.  I appreciate it.  

I have been pursuing a dx for 12 1/2 LONG years and have been through hell (dismissiveness of doctors/not much of a support system, etc.)  As another poster on this board wrote earlier, it can destroy your soul.  My earlier symptoms (Horner's syndrome starting in '90 and something that happened in '94 to my chest after an RTI making it pained/weak/tight/fatigued) might or might not be related to the later stuff, but since '98 I have had clearly neuro-type symptoms including right-sided mouth droop and what I now think was optic neuritis-right eye became very blurred-lasted for at least six months-and when I closed one eye and then the other there was a discrepancy in the shading/color (still have that but slight).  Never went to a doctor again until '99 when I had onset of weakness in left leg and arm and trouble swallowing, once again after a bad intestinal infection.  I have other stuff, too, but it's less clear--a little off balance (no vertigo though), some urge incontinence, and extreme fatigue that gets worse as the day goes on.  The fatigue and the chest discomfort/weak chest that started in '94 are the worse.  I also have this deal with my stomach not emptying now (severe gastroparesis) which is often due to diabetic neuropathy from what I've read but can also be associated with other neuropathy (connective tissue disease, Parkinson's, amyloidosis, MS, etc.).  By lunchtime I look three months pregnant and after dinner I look six months pregnant.

The reason I ask is because I am going to Mayo in a couple weeks, and if the neuro there says I can't have MS because of negative brain MRIs up to this point (she would have to know that wasn't necessarily the case, but I'm afraid she will say that in order to dismiss me), or if she does MRIs and they are STILL negative, I want to know what to say in response to that.  Now I plan to ask her about doing a lumbar puncture (as well as evoked potentials).  (I know they are not fun; I volunteered for research at NIMH when I was 23 (almost 21 years ago) and had the worse headache afterwards--felt like my head was going to explode.  

Of course I have gone a lot longer than you without lesions (if it even is MS), and I know this reality makes it less likely of a dx.  But you are both right, you know your body/reality better than anyone else and know what is normal and what clearly is not.  Thanks again.

[JAM1979]

They found multiple lesions all over my brain. The doctor described it as peppered everywhere. He did five thous. test and what is back is good. He just did a spinal tap with good results. The nurse said with what is back its good. I dont know if they are putting me off until I see the doctor again?? I will see him after I get a neurological psychological evaluation.  This he says is to make sure he knows everything and to what degree. My beginning symptoms were some shadows in my vision and surges in my head. THe most serious or obvious symptoms was my memory problems. Its awful and embarassing. They found numerous lesions. Since then (many months) I have had one test after another.  MS was mentioned, strokes were mentioned.  He even said they may never know what caused the lesions. (Is that insane or what)What I need is to know what I have. Why are they dragging this out so much.  My father had brain cancer so of course this scared me to death.  But he has not mentioned any tumors to me.  When I try to pin him down on what he thinks he says we have to wait until everything is in.  I dont want more leisions and more damage.  What do you guys think I have.

[kimberleydust]

I would emphasise what Annie has said "You know your own body -continue with your quest of Dx"  
I just knew that I had something other than Depression (suffered with this for years)and it was only after 3 doctors that I finally got to see a Neurologist.  I had an MRI done which showed up 1 2cm lesion in the pons of the brain stem.  Nothing anywhere else.  2 days later had another which showed a tiny satellite lesion next to the original.  The Neuro was surprise that there were no others because of my clinical signs but they could have come and gone and there could have been others that didn't show up.  I think that your own personal symptoms tell the most and are more important than any diagnostic test.  If you are in tune with your own body you know something is wrong.  Perservere and persist until you get results.  Meanwhile listen to your body and adapt a self managing lifestyle because even if you find you have MS there isn't a lot they can do (the drugs they offer have awful side effects) but there is a lot you can do to manage it.
And read...read...read...other peoples experiences.  I feel we can learn so much this way.

Regards
Louise

[Demiguise]

At this time, many forums have posted anything you'd need to know about MS. The fastest way to learn about it is to go to
top of this board & click on SEARCH box & then type in
Multiple Sclerosis. There are sites to go to along w/ endless
reading in Q & A by people. Also the FORUMS box takes you to the
Dr to Patient Forum of Neurology. Same SEARCH box use. Most of
the best responses are in the Q & A for you to scan & connect.
The Dr forum also allows you to search Archives to read. The
patient-patient doesn't. Come back here if you have any other questions & we'll try to help. Even scroll dwn here & you'll
find several posts. Gd-luck.

[young at heart]

My first symptoms were muscle spasms,numbness and blurred vision.These symptoms prompted my GP to refer me to a neurologist.It took 2 years of testing to get a diagnoses.
MS is an individualized disease, symptoms effect everyone differently.Since my initial symptoms many have surfaced and have shown there ugly side.
Many disorders mimic MS.If you are having neurological symptoms see a neurologist.