Can You Can Have MS without MRI Lesions?

[Quixotic1]

I know we have covered this before, and I really should spend more time on the National MS Society site, but this is a quote from the NMSS Sourcebook on MRI's.  It says everything so much more succinctly than I do when I'm "winging it."

"Diagnosis
Because MRI is particularly useful in detecting central nervous system demyelination, it is a powerful tool in helping to establish the diagnosis of MS. It should be remembered, however, that approximately 5% of patients with clinically definite MS do not show lesions on MRI, and the absence of demyelination on MRI does not rule out MS. Also, since many lesions seen on MRI may be in so-called "silent" areas of the brain, it is not always possible to make a specific correlation between what is seen on the MRI scan and the patient's clinical signs and symptoms. In addition, with advancing age (probably over age 50), there are often small areas seen on MRI in healthy people that resemble MS but are actually related to the aging process, and are of no clinical significance."

http://www.nationalmssociety.org/site/PageServer?pagename=HOM_LIB_sourcebook_mri

Guys, not to restate the obvious but this is 1 out of every 20!!!  I'll keep looking, but even my MS Neuro, whom I consider very smart, felt that MS was ruled out by normal MRI's.  I need to understand whether the 5% got diagnosed because they presented so classically - maybe with Optic Neuritis, more than one clear attack, a very positive LP, and a tatoo on their forehead that says, "I have MS!"

Quix

[Hope38]

I don't know, but Im one like you that have the three frontal lobe lesions and told it has nothing to do with MS.

Today I had the feeling of numbness on my ears and scalp!  Ugh.

I'm not sure if you answered this but I'll ask again lol  I had Chicken Pox while I was pregnant with my first daughter.  Would this cause "white matter disease" or the lesions in my frontal lobe?

Lisa

[Quixotic1]

Not to my knowledge.  I've never heard of it.  Quix

[Hope38]

Thanks it was worth a shot to figure out what those pesky little things are doing on my frontal lobe.

Thanks :)
Lisa

[T-lynn]

I fell into that 5% with a normal MRI,except for cortical atrophy.

No,I do not have I HAVE MS tatood on my forehead.

It was clinically DX'd after 2 years of testing and evoked potenials,LP plus all the other test of exclusions.

I also had ON and transverse myelitis 7 years prior.Precursor of MS in some.

[Patti66]

I have been diagnosed with MS since 1990.  I have never had a positive MRI (brain, cervical, thoracic) and my LP was also negative (that was done way back when).  My neuro is a world renowned MS expert and has always insisted that despite these negative MRI's, I do absolutely have MS.  It's really hard to take that interferon (which I've been on for about 15 years) when I can't help wondering if I really even have MS at all.  I do have MS-like exacerbations and MS symptoms, no doubt about that - but no lesions on MRI?  That leaves me scratching my head.

[pietiangel]

I couldn't help but feel like I am in the same boat as you guys. I Had my daughter in July of 04 and 3 months after that I started to have really weird symptoms. My legs felt heavy and wobbly and I would go to pick up my daughter and would have to sit down from severe tingling and weakness. I have horrible pain behind my left eye and a foggy feeling at times. I have creepy crawly feelings all the time and I feel like I cannot tell if water is too hot or too cold sometimes. I feel like I am going to pass out when I get in the heat. I get dizzy when I close my eyes alot now and I have noticed I have been getting car sick alot lately. I cannot even cough without getting dizzy and having ringing in my ears. I have had all normal MRI's , but have had an abnormal Evoked Visual. I have yet had anyone who was willing to give me a lumbar due to the fact that all MRI's are normal. I work for a lab and we have started doing a new test called Anti-Myelin Antibodies CNS and Peripheral. It checks 6 titers. 3 titers are for your CNS (central nerve system) and 3 are for Peripheral. Elevated titers in the CNS area have been researched to link to MS and the Peripheral to Gillian Barre syndrome. 2 of my titers for CNS were positive and elevated and 1 for the peripheral was too. I am in the middle of switching Neuro's. I feel like I am running out of people to talk to. I have a grandmother with MS and an Aunt with MS. My grandmother and I have a lot of similar symptoms. I wish I could have found a doctor like you and Patti66 that would listen and know that there is a 5% chance of clear MRI. I think some of the neuro's around here are not fully educated in that area. I am even willing to travel somewhere to get another opinion. Any suggestions?

[Heather3418]

bumping up for the newcomers

[kinkin44]

I had all the MS test done=LP and MRI , MRI showed lesions and immunoglobulins are elevated but no MS. I have every classic symptom of MS and the dizziness is awful.  I had a sleep disorder test done recently and found out I have severe sleep apnea and since I have used my CPAP machine this week the symptoms are beginning to fade and I feel better.  The medical profession states that it is possible to get lesions from lack of oxygen during the sleep apnea.

[kinkin44]

I forgot to state that I would have never believed for a minute that I would of had sleep apnea, when I went down to the sleep center I thought this is probley a wasted trip, I am so glad that I spent 2 nights and 1 day sleep test.  If your neuro suggests it -please take him or her up on it,  I have noticed that this week my joints don't hurt as bad and i have more energy and the dizziness is starting to slack off in its intensity-so everynight that I use it and get used to having that mask on which is used to get hard to I will feel better everyday !!!
Thanks for reading this,  it feels good to talk about it.

[gjo]

question, what if they say you have  ms and you believe you dont have it and you take the avonex, what can happen long term

[jensequitur]

GJO, if they say you have MS... then it's likely you have some sort of demyelinating disease.  It's very hard to get a doctor to sign off on anything neurological.  As you'll find if you hang out here for a while - many people remain undiagnosed, even with lesions.

And if the doctor thinks you have MS and should be on some sort of DMD, it's a good idea.  The DMDs slow down progression, and keep the flares from being too debilitating.

[Treechris]

I'm in agreement with taking the DMD.  Better safe than sorry.  Unfortunately, I fell into that "there aren't any lesions, so let's wait" category, and now I've lost vision in one eye and am 2 weeks post optic neuritis attack in the other.  I can't help but wonder where I would be if I knew what I know now and had pushed a little harder.  BTW, I do have lesions now, which isn't as much comfort to me as it is to my neuro. I sincerely hope things work out for you no matter what you decide.

[essdipity]

Hey, Treechris! Welcome to the forum. I'd like to ask a favor: Would you post your own story in a new thread? We'd like to hear more about you, and I think your story will indeed help others. I'm so glad I didn't "wait and see."

ess

[Rena705]

Hi Chris and Welcome to our forum!  I am especially interested in what happened in your case because I have been denied the DMD's even though I have been diagnosed with MS because my neuro doesn't believe that it is active!  She can't come up with any other diagnosis for my chronic pain but says I am in remission.  Maybe I should be looking for another MS doctor but this is the second one and while the first said on a few occassions when I asked what the problem was "it's underlying symptoms of your MS" the second doctor is adamant even though I have clear lesions on MRI and Oligloconal banding on my LP back in 1993.  My latest MRI was in November and I was told that the lesions are indicative of MS but go get a second opinion (by my first doctor).

So you see...I would be VERY interested in your story and would appreciate it if you would consider sharing!

Lots of Hugs,

Rena

[anamaria73]

My GP told me I have MS after an MRI showed lesions.  Just today my neurologist told me that he doesn't think I have MS because the lesions could be just normal aging.  I'm 34.  I've had progressively worsening joint pain for 17 years, and one recent 3 month long attack of dizziness weakness and what seemed like dementia or Ahlzheimers!

  I thought that oligoclonal bands were a definite sign of MS??

That's why my neuro says he doesn't think I have it.  I hope that you can get the treatment you need, Rena.  It sounds like you could use a second opinion on your second opinion.

[Treechris]

Sure, I'll post my story on a separate thread.  

[Hallie610]

Hi to all that are reading. I was just hopeing that some one can tell me some of the symptoms of Ms. I was in the hospital due to stroke like symptoms spend a few days there and had many heart test done, come to find out that I did not have a stroke , well that's a good thing I thought. And then a Neuro came in to see me, and told me that on my MRI he had seen somethings that he was not happy with, He said I think you might have Ms, and that he wanted to do a few more test. So on the 28th of April I have to go for another MRI of the brain, neck and my spine. I am just hopeing that one of you can help me with some  symptoms you might have. I had numbness on the right side of my face, and weakness on my right side weakness in my arm and legs, I was really dizzy, just felt like i was drunk, and now that I am home I sometimes get this feeling in my leg like I can't move it like it is heavy. Does anyone get things like this happening? And it's really weird to cause the Neuro said that what he was seening on the MRI was all on the right side of my brain. Well hopeing to hear from someone..

[Quixotic1]

Hi, Welcome to the forum.  I hope we can help you find some answers and meet others who have gone through exactly what you are going through now.  I am Quix.  I am a retired doctor with MS and I am one of the Community Leaders on this forum.  I try to help people get the information they need.  

The symptoms you had certainly sounded like a stroke, so I'm glad they could determine that you didn't have one.  Yes, MS can show up with sudden weakness just on one side - almost exactly like a stroke.  I have weakness on my right side also.  It started one morning when I suddenly couldn't lift my foot to put it on my left knee to put my sock on.  That was about three years ago.  Last fall I began having weakness in my right arm.  My leg also feels heavy, like I have to drag it forward to walk.

The dizziness is also extremely common in MS, though it happens for other reasons, too.

I'm sure it seems like a long time to April 28th for the full MRI series.  When the neurologist looked at the MRI of your brain he must have seen some lesion (spots) that made him concerned about MS.  In MS, you can't predict from the side or location that the lesions show up on the MRI where the symptoms will be.  In people with MS there are felt to be many lesions that are too small to show up on the MRI, but that still cause symptoms.  Also, lesions from MS in the spinal cord can cause a lot of symptoms.

It is hard to talk about all the things that MS causes.  A few of the common ones are bad fatigue that is worse that the other times in your life that you have been really tired.  It's fatigue that doesn't get much better with sleep.  Another problem which is common is to feel bad and tired in the heat.  Some people state that they get weaker after a hot shower or with exercising, or on hot days or when the furnace is up too high.

I am going to ask you to do a couple of things.  The first is that no one will find you under this old discussion.  So, if you would click on the "Return to Forum" at the top or bottom of this page, then create a new thread, by clicking on "Post a Question" you will have a whole discussion area where you can tell us all about yourself, how old you are, and stuff.  Tell us all your symptoms if you want (we LOVE information).  Ask any questions and people will be by to say hi and share their stories.

Also, at the upper right hand of any page is a list of things you can click on.  One of these is "Health Pages."  If you click on that, there are some essays about MS and MRIs you might want to read.

We all know that this is a scary time for anyone and it's a time when you have a thousand questions.  That's why we're here.  Also, we have members from all over the world, so there is almost always someone around to talk to.  MS is NOT a fatal illness.  And only about 25% or so will end up in a wheelchair.  Many people think that MS is always severe and will cripple you.  This is not the case, and many people continue to live pretty normal lives except when they have attacks.  There are also medicines which can help slow down the brain damage, so try not to be too worried (I know, what an impossible thing to ask!!).

Welcome again, and I hope we see you really soon on the main page of the forum so we all can meet you.

Quix

[barbie4311]

I have a VERY complex case. I am a 53 year old female. I do have demylinating lesions in the spinal cord. I have moderate to severe cervical stenosis, reversal of the cervical cord, a large VM in the cervical spine (been studied to death), larnygeal reflux, urinary spasms/urgency, migraines, rotary nystagmus, now horizontal nystagmus, dizziness, orthostatic hypotention--was mixed with hypertention--they said baroreceptor dysfunction made worse by whiplash car accident, arm and leg pain---worse at night--stiffness primarily. Also, high estradiol with ovarian solid well-circumscribed mas on right ovary vs. a complex cyst---menopause twice. Oncologist is not thinking that the mass is malignant--watching it closely, however.He thinks it's a corpus luteum cyst possibly. If it grows anymore, it will come out. But, anethesia is a concern with my autonomic dysfunction. Main question---what about the demylelinating lesions ONLY in cervical cord??? Can this be MS???

[Quixotic1]

Have you posted with us before?  We have had a couple Barbie's.  If not, would you repost this to the main page.  You bring up some important things and we have other people with similar problems.

My answer is that "Yes," it is my understand that with significant cervical spine disease - meaning the bony spine and discs - you can have lesions.  If the spinal cord is compressed, twisted or otherwise pressed on, small blood vessels may become cut-off or torn.  This can cause death to areas "within" the cord and cause lesions which may look identical to MS lesions.  This disorder is called Cervical Spondylotic Myelopathy - which means desease of the spinal cord itself caused by mechanical pressures and effects from the bony spine and discs.

It would seem to me  - note that this is not my area of expertise - that it is more likely that you have the cervical lesions from the local problems in the area than from MS.  Please do not take this as an informed opinion.  But CSM can cause these lesions and they do "mimic" MS.

I hope to see your post on the main page.

Quix

[kissimmeethomas]

Please help..going nuts here... long story short is..I have many many symptoms of MS and would like to know if anyone can understand my MRI findings.. it says
THERE ARE SEVERAL NONSPECIFIC PATCH T2 HYPERINTENSITIES NOTED THROUGHOUT THE SUBCORTICAL WHITE MATTER, CENTRUM SEMIOVALE, CORONA RADIATA AND THE PERIVENTRICULAR WHITE MATTER WITH THE LARGEST NOTED AT THE RIGHT FRONTAL PERIVENTRICULAR WHITE MATER MEASURING 1MILLIMETER.  THESE ARE NONSPECIFIC AND NONENHANCING. POSTCONTRAT IMAGES DEMONSTRATE NO EVIDENCE OF ABNORMAL PARENCHYMAL OR MENINGEAL ENHANCING PATTERN.
MILD DEGREE THOUGH NONSPECIFIC PATCHY T2 HYPERINTENSITIES INVOLVING THE CEREBRAL WHITE MATTER WITH THE LARGEST NOTED AT THE RIGHT FRONTAL PERIVENTRICULAR WHITE MATTER.  NONENHANCING AND NONSPECIFIC AND CAN BE SEEN IN DEMYELINATION PROCESS.  SEQUELAE OF MIGRAINE HEADACHES MAY HAVE A SIMILAR APPEARANCE CHRONIC SMALL VESSEL.  ISCHEMIC CHANGES MAY HAVE SIMILAR APPEARANCE AS WELL.  CLINICALLY CORRELATE.

I HAVE BEEN GOING NUTS WITH MY NEUROLOGIST TELLING ME ...MIGRANES ETC.. I DON'T HAVE HEADACHES... HAD A ATTACK ABOUT 1 MONTH AGO THAT RESEMBLED A STROKE.. VERY BAD.. AND NOW I'VE BEEN SLURRING..FACE PAIN.......I'M SORRY THIS IS SO LONG.. JUST NEED TO KNOW IF THIS IS ANY POSSIBLE INDICATOR FOR MS LEASIONS.
ANY HELP IS APPRECIATED..
THANKS
DAWN

[momstired]

  I am 41 years old and 16 years ago had my first of many MRIs for sx that my PCP was sure were MS. the MRI showed no lesions and I got better well sort of, I modified my lifestyle- I had been coaching figure skating and then overnight lost my balance. I increased my desk job hours and stopped skating. A few years later I had my first child- I then lost feeling in my left hand and the top of my leg. I became very weak and was unable to walk to any extent. I would lay in bed- wide awake and not move for hours so that I could do normal activities. I went to see an neurologist and he ruled out myathenia gravis.he did a lp and I had 3 emgs. they were unconclusive and he said i had "probable MS" I had intermittant weird stabbing nerve pain which was not predictable. then- I got pregnant with child number 2- at the beginning, i could not even go to the grocery store because I was so weak, my left leg felt like lead...but by the end of the 9 months I was fine again. for years I was fine- I had 2 more kids(yes 4!) and was ok until 11/2 yr ago I lost again lost strength and muscle tone on my left side. I also have  had some other bizzare things occur- never able to find out what it was...and a busy mom and medical professional- I didnt look to hard. 21/2 months ago I lost all strength ( on my left side again) I had bizzare face pain and my left leg seems to have charley horses all the time. this past weekend i was feeling better- had had another negetive mri and bam...I guess I overdid it teaching 4 yr old sunday school because I could not use my left leg again. I got myself home and decided I need to figure this out. I have had many MRIs all without sign of lesion. I have read that 5% of folks w/MS do not have lesions--does anyone know what they look for. my reading has led me to believe that it is clinical sx- I wonder what I should do now...denial has not made this go away I am sad to say

[jensequitur]

Ack!  Page breaks!  That's just a block of squiggly lines right now...

[sllowe]

Bump. . .

[Momzilla]

bump

[emschick]

I am 36 years old and have a long history of medical conditions. Seems there is always a diagnosis of some type. In 2003 I was told  by my GP I have trigeminal neuralgia. Later that year was told I have fibromyalgia and IBS. One day I had a migraine and my vision stayed very blurry in my right eye for a month. Trigeminal neuralgia started out on the right side of my face and I only had a couple of attacks a year with it. Just the past couple of years have I been getting more attacks and they last for much longer. At the first of this year the pain swapped sides. Now it is on the left side and still sometimes on the right too just not at the same time. I thought it was time to put an end to this aweful pain so I asked my GP to send me to a neurosurgeon. Forgot to mention I saw a neurologist in the beginning. Anyway he was a real jerk. So the doc sets me up with a neurosurgeon this past March. Before I went I had an MRI of the brain only. He tells me that at my age it is very unusual to present with trigeminal neuralgia especially bilateral without have MS. I was devistated. Then he wanted me to come back in 2 months after I have a LP and blood test for Thyroid profile. I also have had thyroidectomy and it has really been wacked out. So I do all these things and everything is negative and normal. I go back to him and he says he could not possibly do the nerve decompression because of MS. I go back to my GP and asked that she set me up for a second opinion. In the meantime, I decided that I would get copies of all my medical records and research this for myself. Before I receive my records I have my second opinion. This guy is a real uncompassionate person. He was rude and never lay a hand on me plus did not have any of my records yet from the other docs. He states he agrees with the first dr and that he also thought that I would not even be a candidate for the gamma knife because of MS. Keep in mind I do not have the diagnosis yet, even to this day.On the way home from this visit I call my GP's office and leave a message. The nurse calls me back the next day and states that there is nothing that my dr can do for me. She says that I should just check out 2 websites and maybe I can figure out what to do on my own. At this point I am totally frustrated and depressed, but I get on the websites and I educate myself on everything I possibly can about diagnosing MS. Several days after seeing the 2nd surgeon I received my records from the first surgeon. He states several things about reflexes and sensation loss. He never mentioned these things to me at all. Then my GP calls me herself because she received the letter from the 2nd opinion. She discusses what we should do next and sets me up with physical therapy on my face. Last friday I had another MRI this time brain and spinal cord only they did not use contrast which I was a little concerned about. GP's nurse called today and set up an appointment for Thursday to discuss results. Has anyone else had this hard of a time to figure out what is going on? I am so tired of the not knowing it is driving me crazy. Every day I feel like I have been hit by a bus because I am so stiff and achy. My right arm has started to give my progressively more trouble and I have difficulty picking up the slightest things. Fatigue is absolutely aweful. Can anyone Help me understand what is going on?

[sllowe]

ems chick

Hey there! Welcome! Oh boy, do you have a lot going on.
In order for us to properly welcome you and for all to "see" your concerns better.  Please, if you can,

1) copy the text you've typed here
2) go to "post a question"
3) paste the text there, then seperate it by using some returns  - into a few paragraphs for us (hard on the eyes w/no returns inbetween the paragraphs
4) Add in the subject line that you are new, etc. . .

If you have problems doing this, let me or the group know, we'll walk you through it.

Hope to see you soon,
Shelly

[atino]

I know what you are going through. I am 40 years old and have have some unexplained things going on for quite awhile. I was 36 when I had face numbness and slurred speach ( not a stroke). At 38 I felt that I could not swollow and lost 50 lbs. I was down to 104 lbs and thought I was going to die. Many tests were run and no cause was ever found. After the birth of my 5th child, I started to loss my balance and had tingle in my left side and terrible fatigue. I let this go on for a while and went to my GP. She sent me to a nuerologist right a way. The neurologist did blood work a MRi on my brain and everything was negative. He put me on med for the horible dizzinesss and told me to come back in 6 wks. Before I could return to him My left leg went crazy and I could not walk. The ER doc did Nuero exam and said I was having an exasperation of ms. My neuro is still running tests but does not seem to be in much of a hurry. The neuro says it could be stress. I have never heard of anyone loosing the use of there limbs due to stress. Sometimes I think I am crazy. I have gone to the internet to find answers. I think we are in a bad situation and we have to do our homework so that we can find answers ourselves. Don't let this drive you crazy because it can. I an not sure were you are from but there are many good clinics that deal with MS. I am try to find one but we are military and trying to get a second opinion from one of these clinics will not be easy. I hope you figure out what is going on soon. Keep strong, stress can make MS symptoms worse. If anyone has any suggestions they would be appreciated.

I hope to hear more from you,
Annette

[OperaMBA]

I hear you all!

I had my first run in with neurological symptoms at 39, in 2001.  I am a 46 year old male.  

I had virus like symptoms on a Wednesday, body aches, etc. and on Friday I was getting my 2 year old son ready to go out for the day and I couldn't remove my son's socks by pinching my fingers together and my forearms near the elbows were as hard as a rock.   By Saturday I couldn't use my arms or legs.   I spent 3 days in the hospital paralyzed.  It took six months to completely get back close to normal due to the fatigue and stamina issues.

Summer of 2003, insects crawling on skin, fatigue (not as bad as before), ants crawling inside of my thighs for 2 weeks, urinary issues, balls of my feet numb, etc...   I got over this one more rapidly.

The intervening years, intermittant symptoms, some depression, fine motor skills come and go, dropsies, weak knees, burning sensation on scalp, etc...

Now, August 2, 2008, I got really hot doing yard work and woke up with aches in the back (that have lasted for 4 weeks now...) like a kidney infection or urinary tract infection...   By friday of that week I was exhausted and I slept 13 hours that night.   I normally sleep around 6 hours a night.

The next couple of weeks or so I felt decent, but the back thing hung in there.   On monday the 18, I was at the doctor getting my ADHD medicines tweaked and the doc said that I seemed tense, so she took my blood pressure, which was 163 over 110, and I am already on BP medicine!   Over the next 10 days I was so tired that I virtually slept around the clock.   I have had a variety of symptoms during this 16 day period.   Fatigue, extreme and painful constipation, urinary hesitence and some urinary retention (foul smelling), cramps, twitches, and extreme spasms that seem to concentrate on the buttocks and legs that sometimes lift me off the bed (always when I am laying down.), rapid clicking in my ears, burning sensations, balance problems, weak knees, my fine motor skills are the worst that they have been since 2001, now I can't sleep because my muscles are so jittery, electric shock sensations, and loss of some smell and taste sensation.   In the last 10 days the back pain has settled into a spot about 2 inches to the right of the spine, just under the waistband of my underwear.   It is like something on the inside is pushing out hard.   This same sensation preceded the 2001 episode.

Anyway, I got my latest MRI results today and no lesions.   ARGH!!!   I have nerve conduction test next Wednesday, so we'll see what that yields.

Frustrated, I am!

Richard (OperaMBA)

[Residentmaid]

I am in ther middle of trying to find out what is going wrong with me.  I have had symptoms for 10 weeks now, off work as nurse for 7weeks. (people frown upon getting their meds from a nurse who sounds and walks like she's drunk) I have tingling, cell phone like vibrations , burning of my arms and legs (mostly my right side, but sometimes my left)  My arm muscles are so tight all the time, and the burning is worse then.  I have been having alot of muscle twitching, doesn't last long, but happens at different places.  I have blurred right sided vision (dim, and double vision sometimes it did hurt for about a week, but opthomologist did not see anything)  I wobble when I stand, I stagger when I walk, and sometimes I slur my speech.I am tired and dizzy. Sometimes Very dizzy.  All of my labs have come back negative, (lyme, vitamins, cbc) EMG Negative, ENT doc said wasn't my ears.  My mri (no contrast) came back negative. so I have been told it can't be MS.  ( I saw a nurse practisioner with Neuro)Really, what is it!   This all landed on my from the blue, I was working full time, full time student, and taking karate 3 times a week.  Now I am tired if I take a shower!  We'll see I guess.
Sharon

[monotreme]

We would officially like to welcome you to the forum and have everyone meet you, so if you wouldn't mind, could you please make a separate post and tell us your story again??

Thanks so much!!
Elaine

[Tinners]

I lost the ability to walk due to my right leg! I've been on crutches for weeks and weeks on end. I've had tons of blood tests and 3 hospital visits all within 1 month and a half. Except I'm only twelve yrs, but I've been looking up all kinds of things on the internet, like MS. I'm seeing a neurologist soon (hopefully) to get an MRI. I've had so many different symptoms it would take forever to list, but the most worrying ones are fatigue, hallucinations and weakness. Does it sound like MS? Can you get MS when you're this young?
-Katie

[doni54]

This was posted on the neurology forum, I thought everyone needed to read this also to get a good background on you.

_______________________________________________________

I am 12 years old and I have been on crutches for 6 weeks. It started with pain in my right lower abdomen (like appendicitis). I was brought to the hospital where they did an x-ray and cat-scan of my hip area. The doctors suspected it was appendicitis until they saw the the test results- completely normal. About 4 days later my abdominal pain worsened suddenly and I couldn't move my right leg. I went to the hospital again, they did the x-ray and cat scan again of my hip, which were normal. Then they did an ultra sound, which was also normal. They discharged me and told me to follow up with my primary care doctor, and gave me crutches since I couldn't walk. I have been tested for lyme disease and it was negative, but i was put on doxycycline anyways for two weeks which didn't help whatsoever. I went to an infectious disease specialist who did blood tests for things like mono- everything was normal once again. My parents are now looking for a neurologist to get an MRI. For the past 6 weeks I have experienced, fatigue, muscle weakness primarily in arms and legs, hallucinations ("rain", silver dots, black dots and black clouds, sometimes they are still there when i close my eyes), ringing in ears, hear weird sounds (music, muttering ect), inability to stand from sitting position without using my hands, loss of concentration, memory loss, slurred speech or stuttering, sensitivity to light, intermittent headaches, tilted head (recent onset), continued right hip pain, occasional right shoulder pain, difficulty doing daily activities with right arm especially, burning sensations on bottoms of feet, new symptoms arrise or intensify at night, headaches (top and back of head, like it is going to explode),and inability to sleep normal hours (sleep during day awake at night). I've seen an eye doctor who said i don't have anything obvious wrong with my eyes. It's getting more and more difficult to use my crutches because I am so weak. I've missed 4 weeks of school and have multiple tutors. Could I have MS? Do you have any suggestions????
__________________________________________________________________

[doni54]

Hi Tinners,

Welcome to the forum!!  You seem like a very well spoken 12 year old!!  Your description of your symptoms do sound like you are having some symptoms related to MS.  

The only thing about MS is it has lots of mimics which produce some of the same symptoms.  Most neuros will first start on the process of eliminating the mimics.

MRIs of brain and spine should be done, with and without contrast, preferably on a 3T machine.  They also, if MS is suspected, will want to do a lumbar puncture, to look for O bands.

There are many other tests, but I won't go into all of them.  Maybe your mom could check out the forum too and read some of the health pages.  

The health pages cover a number of topics, including the mimics of MS.  You can find them in the upper right hand corner of the page.

I'm glad you found the forum, it is a great place, especially when you need answers to what is happening to you.  I look forward to getting to know you and your mom.

We will wait and see if anyone sees your post here, if not you probably need to start a post of your own and copy/paste both of the posts from here.  That way it doesn't get lost.

Take care tinners, I'm happy to meet you.
doni

[doni54]

bump..........

[sickofitall49]

I'm new to this community. However I can tell you that is absolutely possible to have Multiple Sclerosis and not have positive MRI's. I suffer from Uthoff's Phenomenom (heat intolerance), severe bladder problem (retention-so I had to learn how to self-catheter 5x a day), fatigue, neurological pains-burning, stabbing, reflexes are hyper-reflexive on left side, muscle spasms in back. legs, & arms, tingling sensations,blurry vision and that wonderful neurological fatigue.

My neurologist is fantastic. He believes I have MS. It could be a slow Primary Progressive type.
I was on disability for 2 years and I am now back at work full-time(but at a lower grade level). It was a slow journey. I'm not sure how much longer I can work though. I'm a 49 year old female and my two girls are grown. I am happy to be able to work though as I have friends with MS that are alone at home unable to work outside the home.
There is no doubt in my mind that I have Multiple Sclerosis.
sickofitall

[KatNmind]

At the age of 12-13, sitting in class, my left toe starting hurting very bad. I thought nothing of it until that pain started traveling up my leg, and very painfully to add. I got scared and went to the nurses office. The creeping of this strange feeling continued until I felt it go through my abdominal area, this is when I bent over in agonizing pain. It hurst so bad I was at this time crying out loud. The painful creeping continued down my left leg, and down to my toes. My mother came to the school, and she drove me home. I was so weak in my legs, but I remember the pain more than anything, the awful killing pain when touching my skin, even the air hurt, and this is no lie. After 1 night at home my mother brought me to Kiaser in Santa Monica CA, I was barely walking from weakness and pain. My mother lifted me up with what help I could do to assist her ontop of the examinging table. When the doctor came into the room, he spoke w/my mom, now I could not even hear them cause of being in so much pain, therefore I have no idea what was said, but they came ever to me, and told me to jump off the table I was sitting on. I told them I would fall to the ground, that I was scared to jump. I knew I had no feelings in my legs. Well after being screamed at by the doctor to jump, I scooted to the end of the table, and jumped, boom, legs crumpled underneath me, my mother reached out to no avail, and there I am on the floor. I was lifted back upon the table, and yes in tears. The next thing I know I am now seeing a Psychaitrist. It took one visit there and my mother felt it was a waist of her time, mine, and money. I was paralized from the waist down and had Neuralgia throughout the waist down, with no bladder/bowel control for three months. I scooted if I wanted to get anywhere. It took another month to walk with out assistance. I am now 47. I have been "Clinically" diagnosed with Lyme in 97. I have had a seizure disorder, which they called Psuedo, I have three Lesions in my Chirod Plexus area (not sure on the spelling) and no other lesions, LP was neg in 97. I have my thiroid checked and rechecked all neg. I have had Avascular Necrosis (AVN) and almost lost my left leg, bone grafting in the femur and tibia by a dr who so gracioulsy studied the problem, before cutting it off, and only took 6 surgies, but hey got my leg. I have been checked by, well you name it, I have been through everything and everyone, you name it, however, only one nuerologist in 97 who said I was blooming crazy too. I have had many hundreds of bouts of trigeminal neuralgia the last 30 years, and my mother gets them. I am hypersensitive to touch in certain areas on certain days, weeks, months, and the years of learning all of this. I have a senitivity to chemical medications, and green teas, I cannot even take a simple asprine, IBU, anything without my kidneys wanitng to shut down. However, I stay off of them I am fine, well considering. I have to take 10 meq of Potassium every day just ot keep my level up and no one seems to knwo why. I do take Nuerontin, and I cannot afford the Lyrica they want me on for my other newly "clinically diagnosed," Fibramyalgia. I have studied the Internet until my eyes watered. I know I have MS, but the doctors dont think so. I have had that nuerits (HMMM spelling) in the eye, when your eye turns bloody red, vision problems. I get false reports, but real painful feelings. Now today, I have both feet and the last two toes on each Note: not including pinkie toes (weird), and numbing up into my thigh, and left back hip area, along with both hands, last three fingers numb, burny escpecially when I squeez them, weak in legs and hands arms, fatigue, and when I look at my hands and feet in the Morning, afternoon, night, or when ever they ask my attention with the pain, I think they should be black cause of how numb they are. Any Ideas anyone? I can feel for each and every one of you. I am sure I have left out much, I too have dizziness. I cannot close my eyes and turn in a circle, I do not have vertigo, although I have had vertigo in the past and this in not vertigo, because I dont have any fluid in my ears. I have Mitral Valvle Prolasps but mild. I swell with fliud continoulsy. My heart is strong, my BP is great, MY sugars a perfect????

[VinnyMac]

I had a positive MRI, the doctor did an examination on my eyes and refelexes, and everything was ok. I had blood work done and everything was fine except for slightly high sugar. I have no numbness or tingling on a large scale, no dizziness, no lack of coordination or weakness, and no paralyzation. I also have no loss of vision. I have had blurry vision for most of my teen years and require glasses. I have no twitching or mucsle spasms. The only symptoms I have are nerve pains that shoot throught my body at random times. They aren't very painful...just annoying. A lot of times the pain is burning and focused in my neck and head and shoulders...especially after sitting on the floor for a while. Sometimes I feel a little hazy and I am forgetful at times and it scares me. I was diagnosed with anxiety and depression. I can't shake the feeling that I have MS though because of the horror stories I read about how you can have it and have a clean MRI, or how you can still have it even with very mild symptoms like I have. Is it likely that I have MS from what I've said? I am going to the doctor this week and I want to know if I'm just wasting his time.

[essdipity]

Hi, Vinny, and welcome.

I'm a bit confused by your post. You say you've had a positive MRI, though it sounds as if it was negative (no issues).

If you're having these symptoms you're right to have them checked out, so don't worry about wasting the doctor's time. He'll still get paid. If you have anxiety and depression, are you being medicated for that? Remember, our bodies and our minds are one and the same, so your symptoms could well be from an emotional source.

I have to say that what you describe doesn't really sound like MS, so please don't worry, and don't spend time looking up your symptoms on the web. That's a good way to feel worse. Instead, have everything checked out by a doctor you trust, and follow his/her recommendations.

If you'd like, please repost your information in a new thread. This is the end of a very old one, which fewer people are likely to see.

The best of luck to you.

ess

[VinnyMac]

Yeah I meant negative. Thanks for the help I have actually posted a new thread when I first joined but only got one response there so far. I was on zoloft and valium even at one time but I've stopped taking both. I got better for several months but i started feeling the pains and it just set it off again. Plus the fact that it stopped then started again made me start thinking in terms of it being an attack. I'll just see what the doctor says and until then I think I'm done looking on the web it just makes me panic more.

[jdyste]

I am being tested for MS.  I had one unsuccessful spinal tap.  My MRI shows 3 brain leisions, one new one since last March.  I had gone in last week for slurred speach and facial numbness.   After one week of steroid treatments, I can't stand, I can't lift my left hand.  and I'm falling over in my chair.  Is this normal?