Clean MRI; Neurologists says no MS but I have numbness and prickling in legs face and arms!

I've been going through something similar for the past six months. My symptoms have been extreme fatigue; numbness and tingling sensations in my face, head, hands, and feet; tremors, vibrations, and buzzing sensations all over my body; painful muscle spasm and stiffness in my arms, back, and legs; shooting nerve pains throughout my body; squeezing sensations around my rib cage and top of my head; bladder and bowel problems; blurred vision; slurred speech; cognitive problems such as slow word recall, substituting the wrong word, forgetfulness, etc. I also have messed up reflexes in my legs, including hyperactive knee reflexes, absent ankle reflexes, and present Babinksi reflexes in both feet. All of these are typical MS symptoms (if there is anything typical about MS.)

I've had brain, thoracic, cervical, and lumbar MRIs, and they've all come back normal. I've had EVPs, all came back normal except for the SSER on my left leg. My last test was an LP, which was also normal.

The answer to your question is yes, you can have MS and have a clean MRI. You might want to check on having EVPs or an LP, just to be thorough.

Good luck!

Thanks for the input; I have not had any other tests besides my MRI 2 months ago. I have an appointment with the Neuro on Monday, I will ask harder questions. The NEuro was positive that I did not have MS after his physical and MRI exam, he sent me to a Infectious Disease Doctor who has been treating me for Lyme Disease for about 7 weeks now.

The common testing for Lyme is actually two tests; the ELISA and the WESTERN BLOT. I tested positive on the ELISA and negative on the WESTERN BLOT twice. The Lyme diagnosis is very subjective, and my lyme specialist feels that the combination of my physicial symptoms and my ELISA results spells Lyme.

Lyme and MS symptoms are very similar, but I am sure you have been thru all that...

Lyme is a blood test; but they are notoriously wrong, so physicians are forced to treat symptoms and guess....

Twitchy, I have alot of the same symptoms as you.  I have had them for 6 years.  My MRIs and other tests have been normal, my doc says no to "MS" also.  I can't stop wondering what the heck is going on with me.  I just started to take buspar about 2 weeks ago for the anxiety that I am dealing with, and just 2 days ago, I upped the dosage to 15 mg a day, wow, everything went crazy, its been a real bad last 2 days.  My only symptoms are muscle twitches in myt legs, sometimes they will buzz, and weird facial tickling, like a hair moving across my cheek or nose, its really annoying.  The facial thing has been going on for 7 years, the others for 6.  I wish I could help you, its not fun, I know.  I do  have a family history of MS, my gram had it, so this makes it worse. Take care and I hope you find an answer.  I was also tested for Lyme, and this is my next route to find a LLMD and have the good testing done. 

Hi Twitchy,

The only confirm test I know of for Lyme Disease is a Lumbar Puncture. Have you had this procedure done to confirm Lyme Disease?

Ark

twitchy said...

The common testing for Lyme is actually two tests; the ELISA and the WESTERN BLOT. I tested positive on the ELISA and negative on the WESTERN BLOT twice. The Lyme diagnosis is very subjective, and my lyme specialist feels that the combination of my physicial symptoms and my ELISA results spells Lyme.

Lyme and MS symptoms are very similar, but I am sure you have been thru all that...

Hi there, to answer your original question, yes, you can have a clean MRI and still have MS. It has been determined (reading MS Society of Canada) that MS damage can begin before lesions will actually show up on a MRI.  I am living proof of that, it took three MRI's in the course of 15 months before lesions showed up....yet I was experiencing dizziness, optic neuritis, stiffness in my neck and shoulders, and some tingling on my face......it was not until I developed L'Hermitte's sign that I went back for my third MRI and lesions were noted in my spine and brain - hence the dx for MS.....

Long before MRI,s the medical perfession use to use the "hot bath" method to confirm MS - they would use this method to see if the symptoms increased, or developed when the patient was put in a hot bath.....most MSers are heat sensative, and heat of most kinds will bring on symptoms or increase the intensity of current symptoms if exposed to heat.....note that not all MS patients are heat sensative....

Gary

 I'm becoming VERY frustrated with my situation. I've had the following symptoms that have progressed over the last 3 years and am tired of feeling so awful night and day! Anyone with any advice or information to pass on?!

     Stabbing pains & electrical shock sensation on the left side of my head. Numbness, tingling and burning sensation in my face. Eye pain behind my left eye, sore eyes with movement and at times temporary loss of vision in my left eye. ((I have already been given the Dx of Trigeminal Neuralgia.)) Dizziness, confusing, memory loss and problems finding words.

       I also have severe joint, muscle and bone pain throughout my body. I was also given a Dx of Fibromylgia, but I KNOW it is caused by an Autoimmune disease (I have tested positive for such time and time again... although my Neuro has given up looking for the real cause of my illnesses). I have swelling in limb, loss of use in limbs, I have trouble acknowledging if things are too hot or two cold...I have extreme Chronic Fatigue (also Dx'ed as so).  Severe tremors in my hands, legs and head. Severe muscle weakness, unable to bear weight on legs due to pain, my limbs at times feel heavy/weighted down, and I cannot begin to truly describe how painful the numbness, tingling, burning (face, hands and feet feel as though they're on fire while the rest of me feels like I have the worst sunburn), itching and the shocks all over my body are!!! It's a toss up of what I'll experience from day to day. The pain is never gone, the fatigue is getting worse and my flare ups are coming more often and to a more extreme strength.

           I have had a normal MRI, EPT, and blood tests come back clean for MS. I have not yet had an LP, but with tomorrow's visit to my Neuro I'm going to request that it be done. I am frustrated at the fact that because the dr did all his surface tests and the only thing that came back positive was the Autoimmune tests, he doesn't want to look any further. He just wants to "treat what we know you have". After 3 years of severe flare ups that are now at least once a month-lasting a week or two at a time or simply lasting months on end- I'm to the point where I'm going to start pushing. I don't want to be one of those patients you'd hate to see, but have to deal with anyway... but this is my life. I'm 25 yrs old with two childs. I am disabilitied by my symptoms and can't enjoy my YOUNG life with my boys because no one wants to continue looking. My gut feeling is that it's MS, but I don't know how to approach my Dr. without him thinking that I'm crazy.

           The symptoms have piled on over the years and I suffer from nearly all the classic signs of MS. I have done my research. I've learned that there ARE MS suffers that won't have lesions at the start of their disease and some that simply won't ever have them. I've also researched the fact that you can also have normal MRI, EPT, LP and ect testing. Most Dr's agree that is best for determining MS is 1. Patient history and listening to complaints of symptoms and 2. Physical examination. "Silent" lesions are a possibility, majority of MS blood testing is to see how long it might be until you have another relapse... Not to see if you have the disease, how severe or how soon your next relapse might be (Though there is a new type that will determine when your next might be). So why aren't the dr's taking the time to examine us fully?! Why aren't they taking into considering that every living being is never the same?! Why are they simply not listening to us after they can't find the easy answer?!

            I'm sorry this was so long... but I'm just plain fed up with the Dr shrugging his shoulders at me, scratching his head and saying "I dunno".

Thank for your reply Gretchen. My neuro appt is today. Like I said, I don't want to be the pushy patient, but I'm not taking a backseat to their "I don't know's" while my health keeps getting worse.

         The new test is called Anti-Myelin Antibodies CNS & Peripheral. It's suppose to predict how soon you might have another flare up (also making it easier to dx MS). They can get a peek at when it might be coming instead of trying to find a trace of where it's been.

          I've gained severe Fibromylgia from the last few years of doctor's tossing me back and forth and no one treating me for what they all knew I had. So, I'm a mobile 1/2 of the month and not the other 1/2. It's never clear how long I might be off my feet, when those days will come, or if I'll need crutches (not helping so much after losing arm strength and tremors lol) or I just have to have my family assist me in whatever I need. I don't want to be put in a wheelchair, but I know that it would be a better idea for me to get one for the very bad days.

          Each dr I go to here in NC (and you would think that they would be the best here) do the surface tests then throw their hands up when it's not something easy. I get passed around like sucker on 1st graders playground and then end up with less answers than I came in with. *sigh*

          I'll repost to let you all know how to dr's appt went. Thanks

 

Hey guys! I just got back from the neuro. I've come out with less than I walked in with (as expected). He's still scratching his head. Now we're going back to testing for all the things I've been tested for 20 times before (including Lyme's which has been ruled out by multiple blood tests). I am now getting scheduled with UNC neuro's for a 2nd opinion. Wonderful- This means we start back from square one. I got frustrated with the doc and started getting loud with him. I apologized after, of course... but I'm so tired of being sick, getting bounced around from one dr to the next and still coming out with nothing new.
When my symptoms first started I was living in wv in the middle of winter.... no ticks to be found. *Sigh* I wish it was such an easy answer.

 Thank you for your kind words Rhonda. I am just beyond exhausted with being tossed around from one doctor to the next. My medications have horrible side effects (for my tremors and Trigemal Neuralgia). So, I'm kinda' depressed. I know in my gut that they're missing something. I'll asked about the exact testing they're doing for the Lymes...But I'm also having to see my PCG tomorrow for a lump (swollen lymph node I'm sure). It's an inch and 1/2 long and it's just another thing to deal with... I hope that everyone else is hangin' in there and keeping strong. I'm trying my best to do the same, but I feel like I'm falling apart. It's nice to have other's that care. Thanks

Gretchen1 I have a few questions for you, first let me introduce my self I am White Beard I just recently started posting over on the Chronic Pain forum. I have degenerative disc disease, and have had a C6/7 fusion, and have multiple bad disc with most of them being thorasic. But I have many other problems that can not be explained by the bad disc. The Last two years they have had me on Parkinson medications, but I have just came back from the Movement disorder clinic at Rush In Chicago and they are weaning me off the Parkinson meds as they say I do not have Parkinsons, they haven't sent my Neurologist there report yet but they told me they are going to recommend futher test. Numerous time in my past I have been told that they think I have MS, but so Far the MRI's have been negative. I have had abnormal EMG's and I am right handed but I show a definite, and noticiable right sided weakness, I also have some documented swallowing difficulties, I also sometimes have difficulties with speaking, slowed speech with long pauses, and I can't can't explain it lose of words?. and along with balance problems, and neuropathy in both legs, and I have a weird curved zig zaggy flashing light show that pops up periodicly in my upper right portion of my vision, and can last up to 15 or 20 minutes, and then goes away, sometime it will happen a couple times a day, and other times it will only happen once every couple of months. No pain involve with it. one neurologist said it might be a migrain??? But I have not headache! I suffer from absolutely terrible muscle spasms, and they happen everywhere, in my hands, neck, and arms, inside my thighs, (those are bad) calves, and in my feet especially the arch( those kill me) and I am on 25 mg Baclofen every 8 hours, and that has been real Godsend. But with that said every now and then I will get a period when I still get the spasms and it is like I was never on the med. They will last from a few days to a week or more and then go away. Allot of my symptoms do the same, they come and last a while and then dissappear, usually when they leave, I usually have some kind of deficit, less movenment in my arms or legs or what ever. I used to be able to hold my arms out straight and turn my palms up I can nolonger do that, it started off first in my right arm now it is in both. I walk with a cain, I suffer from chronic pain, and often feel like a bee is stinging me, and I swat at it but nothing is there??? and am on meds for the chronic pain primarily for my back.. The one med that seems to help me the most with everything is when I have a flare up with my UC, and they put me on Prednisone, athough emotionally I can't stand the med, Physically it helps more than anything else. Go figure.

Now for my questions, How does one find out for sure that they have or don't have MS? I have heard people ask have you had a spinal tap?, no Doctor has ever ordered, it, is that important to have? Is there any test that might be more beneficial in trying to find out what is going on. I have been in limbo for so long and I have heard so many contridictory statements, one neurologist told me I can't have MS, because MS patiets don't have pain issues that I have? But yet I have read that they have exactly the same type of pain issues that I suffer? So who is right? I do know that over the years, when ever I have a flare up of symptoms, I alway end up in worse shape than before. I am only 57 I am on disability, and I dread to think about what the future has in store for me. I once took a questionaire online about symptoms, and I matched the best with two disease MS and ALS, I assume if I had ALS I would be dead by now! So... Any thoughts? would be welcome.......White Beard