Can You Can Have MS without MRI Lesions?

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 (migraines) 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?

[Male47]

Hello, I am a 47 year old male that feels like he is going crazy. Five years ago I had my first episode, I had a shocking pain in my right arm and tingling from the top of my head all the way down my back. Went to the ER thought I was having a heart attack. While at the ER I also had a tough time remembering peoples names that are close to me. They found nothing wrong with my heart and sent me home. A week later the same feelings came back. Back to the ER again, same findings. However this time they sent me to a neurologist. He did a million dollar work up, His words, and found nothing, He only did a MRI which came back normal. Fast forward..4 months ago I had another episode. This time There were more symptoms. I felt like I was in a fog and had a hard time focusing on anything and find myself searching for words that once came so easy for me,along with my skin feeling like it is crawling. Both of my hands are very shaky and I have muscle spasms in many places. I have a new neuro and he had a MRI done which also came back normal. He wants to schedule me for some more tests to try and get to he bottom of all of this. Has this happened to anyone out there?

[essdipity]

Hello to both of you.

I urge you to start new threads with your comments and questions. Old ones like this get read much less often, and are not specific to one person, so members here don't usually want to get into personal answers here.

Please tell us about yourselves that way!

ess

[Vari_Scudi]

Welcome to my nightmare.  Have been treated for "something" for over five years.  Please someone help me.

[Quixotic1]

Hi, please, please join us and tell us about your nightmare!  We have hundreds of people here who well understand neurological nightmares.  Please click on "Post a Question" at the top of this page and tell us your whole story.  And Welcome to the MS Forum.  Is MS a possibility for you?

Quix

[tiggywoo]

I'm so confussed at the moment someone please tell me if they think i'm barking up the wrong tree completely!
Do you think MS is a possibility?
In 2001 I woke up and my left side was numb after much discussion and eventually going private the nuero said I may have had a mild stroke although all tests were clear mri etc still needed physio though, or it could be stress related they constantly change there stance on this. Ever since then gradually I have never felt 100% and other stuff has started to happen. I'm always tierd my muscles,ache, my memory is terrible, i have regular bad pain in my head and last year I started having what they dr's are calling fits but the only thing affected is my vision, my eyes's lock onto one thing and i can't control them and i go all blurrey almost blind temporaily they have put me on epilepsy pills although when they put me in hosp I did not fit, they said there was slight eveidence of seizures?? But now I keep getting pins and needles in my left hand and foot and numbness for short periods this is new and happens randomly.  Told neuro she increased epi pills which i don't want to do and said it's migrain i think she thinks I making it up. I'm not I'm 28 I just want to know what's wrong I'm a newly qualified counsellor and I need to be well so I can get a job.
Any suggestions please??  and thanks I live in london by the way.

[Fred9]

I have a high suspicion that I have MS. My first "attack" was 10 years ago. However, my MRIs are clear. What is the likelihood of having MS for 10 years but no lesions showing on MRI?

[dragonflynda]

My neurologist refuses to diagnose MS based on no lesions regardless of the fact my ophthalmologists and other doctors have diagnosed me with MS.  This is a hot issue between us, and he is a major neurologist and his word "is final."  My ophthalmologist and urologist tell me that regardless of what he says, I have MS.  I am being treated for all of my symptoms individually by different meds instead of having MS specific treatment.  It is very frustrating.

[bbrown67]

I am so confused about the lesions on the brain.  My son is 20 years old.  2 years ago he had a bout of optic neuritis, doctor ordered an MRI which showed no lesions.  He is now having numbless/tingling in his left arm and limited mobility and muscle control of his left hand.  He is also very tired and wants to sleep all the time.  It is greatly affecting his ability to perform his job.  As is the case for many 20 year olds, he does not have medical insurance available through his employer and he is too old for me to carry him on my insurance.  The posts here are definitely interesting, but there doesn't appear to be a definitive answer as to whether or not a person can have MS in the absence of a positive MRI.  Not sure what to advise him to do.  

[Bethie69]

I'm not sure anyone will even read this since it looks like the last post was in 09', but I wanted to post a note since I'm feeling very frustrated right now.  

I have had a MRI, EEG, and EMG.  All three tests came back normal.  I have numbness, tingling, balance problems, spasticity, restless leg syndrome (periodic limb disorder at night, but basically the same thing), bladder issues, fatigue, and periodic memory issues.  I have not had any visual problems.  The doctor thinks I have spastic paraplegia, but I was told the only way to tell this conclusively is to have an expensive blood test.  Should I have a lumbar puncture first to rule out anything else, such as MS?  I know a couple of people who have MS, and they were considered an anomaly such as myself.

[Lulu54]

Hi Bethie, You're right that your post probably won't be seen or read by many.  How about you start a new post and I'm sure plenty of people will have something to say.

be well, Lulu

[jallenton]

Glad I found this forum.  I will try and keep my story brief if possible.  Back in mid October I had spinning while rolling from side to side in the bed at night, had this same thing back in Feb. eventually it went away.  But with this episode it lasted about a week, and then one morning it didnt go away once I was out of bed.  But it wasn't the spinning like vertigo, it was off balance and dizziness.  Been to GP who sent me to ENT.  ENT diagnosed "disequalibrium/dizziness + perifpheral vestibular weakness."  An MRI was done and showed only two small findings: Left hemispehre slightly rotated, no clinical significance, and hippocampus bilatterally small, no clinical significance.  I still have the same sympstoms as I did back in mid October, and they are progressivally getting worse. I am also to the point where I am walking with a cane, suggested by my physical therapist, that my GP suggested I start seeing for the dizziness.  Just to help me feel a bit more stable when walking.  I also have over the last few weeks finding things take alot more concentration.  Like driving etc.  Also I can get up take a shower, shave etc. and I am exhausted.  Also I am having trouble getting words out sometimes.  So I have to stop and think about what I am saying, and then say it again and usually can get it out ok the second time, I have also began stuttering, occasionally.  Now backing up to 2002, I had numbness in my left face, shoulder and arm.  MRI was done back then to rule out MS, was negative so never went any further.  Then a couple years later I started getting pins and needles on the outside of my left thigh, and sometimes a burning senstation. After visiting a couple docs, I was told it was in my head...lol  So I just figured I just live with it.  I dont know the time frame but a year or so later I got the same sensation in my right outer thigh.  Didnt ever bother to have it checked.  I have this sensation everyday since then in both outer thighs and have just learned to live with it.  In February of this year I was checked into the ER for fatigue and lightheadedness.  They thought it was my heart, but all came back negative.  As I research the internet I have almost all the symptoms of MS, including the dizziness, pins and needles, nausea, weakness, slurred speech etc.  My doctor currently has me on anti-nausea medcine and valum.  But I dont like to take them as they make me incabable of wokring because they knock me out.  Anyway does any of this sound familiar to anyone.  But most importantly I have been referred to a neurologist in a couple weeks I have an appt.  I dont want to go in and say hey I feel like I might have MS but all MRI's are negative.  Any help or support would be appreciated.

Jeff A.

[Lulu54]

hi Jeff,
This is an old post and most people won't see your message here.  Would you kindly copy it and paste it into a new question for everyone can see it?  You've put a lot of words together and it will be a shame if they're not read. Also, if you can break it into smaller paragraphs - most of us have trouble focusing on long, continuous blocks of text and despite the desire to read it, all the words run together.

Thanks - I'll look for your new post.  Lulu

[Bala71261]

Hi all,

I’m 49 year old healthy man of Asian origin who went to gym three times a week and did a lot of weight training. In March 2010 I developed slight pins and needles on my lower left inner leg. This moved to whole left leg, left arm and now all over my body. I have now constant burning/tingling sensation everywhere and occasional numbness in fingures. I have had all the blood tests two MRIs on my head,cervical,lumber and sacral.Head was clear of any lesions, but all cervical disks are dehydrated, C3-4 lost height, there is a minimal bilateral exit foraminal narrowing caused by neuro central joint hypertrophy, in lumber sacral L1-2 and L3-4 disks slightly dehydrated and lost small amout of height, L3-4 on the left is far lateral disk protrusion but this does not impinge upon L-3 nerve root. My Neurologists recommended physiotherapy. Please explain the Radiographer’s comments, are my symptoms in line with these findings?

Unfortunately, I am still worried about potential sinister diseases as these symptoms have not gone away and its 24/7 except when I am asleep after six months of rigorous exercises, chiropractic care and physiotherapy. Moreover, as per Radiologist’s report although there was far lateral disk protrusion on the left of L3-4 disk, this does not impinge upon L-3 nerve root, hence it may not be sciatica.

In addition to the unremitting burning, tingling, prickling, occasional numbness and recently developed involuntary muscle twitching all over my body and insect crawling feeling in my head. I went see another Neurologist and he conducted the usual rapid alternating movements, point-to-point movements, gait and reflexes test. Although he was happy with my responses, he ordered an EMG test rule out potential sinister diseases. It was in October and it came out negative. My Neurologist ruled out ALS (MND), MS etc and suggested that I have functional neurologcal disorder.

I am generally a real worrier and a very anxious person. Hence, this involuntary muscle twitching makes me worried about possble MS, ALS (MND), Parkinsons and Fibromyalgia.

It has been over nine months and no improvement. Could you please, please advice?

Thanks in advance.

[essdipity]

Hello, Bala. It is never a good idea to post at the end of a long and old thread, since lots of members are likely to skip over it. Whenever you post about your history, I urge you to start a new thread and introduce yourself there.

However, I have read what you've written, and have to say it does not sound like MS. MS does not cause all-over symptoms, because each problem at each location is caused by a separate MS lesion, and it is virtually impossible to have MS lesions throughout the central nervous system acting up at the same time.

I can't suggest what other diseases can cause your symptoms, because I am not a neurologist, nor is anyone else here. We are laypersons who help each other out based on our collective experience, which is vast at this point.

Still though, I have to say that everything you're experiencing can be caused by anxiety. That is a very debilitating illness that should not be taken lightly, nor should sufferers be dismissed as 'crazy.' Have you read up on anxiety? Have you been evaluated by a psychotherapist or psychologist? If anxiety is a possibility for you, you have nothing to lose by trying one of the many medications used in that condition. I'm sure it would be wonderful for you if you could get your old life back through that route.

Good luck to you.
ess

[Bala71261]

Dear Essdipty

Thank you very much for responding so promptly and in fact that I was pleasantly surprised to have received a response at this stage of this thread.

It’s very reassuring to know someone cares. I must admit that all three neurologists that saw pointed to anxiety, but I have always contemplated that it’s impossible that anxiety can cause all these wired symptoms. Perhaps, I am in denial or did not want to see a psychotherapist or psychologist.  May be I ought to look into this.  

Once again, I really appreciate your kindness and may god bless you.

Best regards.

Bala

[sstencil]

I am blown away by your post! It could have been written by me, right down to the fact that my grandmother and aunt have MS (the only people in my family that have been diagnosed) and our common age. My symptoms also presented roughly 3 months after my son was born in 2005. Another thing that really struck me about your post was that you have creepy crawlies all over your body, something that has driven me crazy on and off for the past year and a half. I also have the rest of your symptoms but the tingling is usually only on my left side. During my last episode the left side of my face (ear, nose, chin, cheek, tongue, gums, up to my eyebrow), neck, chest, over to my shoulder and down to my finger tips) were tingling for 5 days before I went into the hospital. When I got there they dismissed me, gave me a shot for my migraine, and when that pain was under control they released me (despite the continued tingling, confusion, and vertigo). I have been dismissed so many times, without an MRI or CT scan, that I started thinking I was crazy until... I began collecting my family medical history and found out that my grandmother and aunt (that because of a messy divorce when I was a child I have VERY little to do with) have MS. I decided to call my grandmother (despite not speaking with her for 10 years) so I could get the rest of her medical history and that of her side of the family. While we were talking we discovered that we have almost all of the same symptoms and had both been dismissed by the same doctors (she lived in my area until 3 years ago). She told me that I am not crazy and that I need to speak louder in order to be heard and if that doesn't work then I need to yell. After years of being told "you're stressed out", "you need to get more sleep" (despite normal sleep patterns), "you need to slow down" (despite the ease of her life as an adult with grown children) she finally found a doctor who took her seriously. He ordered an MRI and not only did they find the lesions, they also found a golf ball sized meningioma in her brain. Hearing what she had to say prompted me to push my doctor and I have an MRI scheduled for tomorrow. I have also had all the labs done, only to find that I have low vit. D (whatever that means). I am very nervous that I have MS but lesions won't be found so they will dismiss me yet again. I have been reading the stories of various people and have heard a lot about spinal MRIs that can also lead to the discovery of lesions caused by MS. Have you had that done? If they do not find anything on my MRI tomorrow I will not stop looking for an answer because I know there is something very wrong with me... I hope you won't stop either! I would love to know more about the progress made in your lab. Has the work you are doing published?

Stephenie from WI

[Lulu54]

Welcome to the forum here - I'm so glad you found this information useful.  You might consider copying your story and starting a new conversation thread.  Many people will not stop and read your comments at the end of this and I'm sure they would love to meet you and hear your story.

Good luck with the coming tests - I hope they find the reason for all your symptoms and find it soon.

be well,
Lulu

[rmcoble]

I wouldn't scratch your head about neg MRI...its not a test...its a tool to help make a dx. I too have had very little MRI lesions with one cervical with mild demylination, but still struggle to get a dx...I see a specialist next month. I have had problems all summer and just yesterday in yoga...when my body temp rises, I get tremor...leg spasm, and teh list goes on. I

[whitewolf63]

In july i went to the hospital because of a severe headache for four days. my blood presure was high so they did a cat scan of my brain to see if i had a mini stroke which came back negative. but n they did find a black area in my brain that was not there two yrs ago. So thenhey  i had a mri of my brain. they found what th my balancehey called demalanating diseae of the  cns which looke suspesois nfor MS. i had a lot of thests done. my vep came back slow in both sides. then i started having issues with my balance.in sugst my babance was worse. then in  oct i had apd a mri done of my lumbar spine which showed no lesions.my balance at this time is worse i cannot walk one foot in front of the other without loosing my  balace the nerologist  is going to do a spinal tap sometime in the future

[whitewolf63]

my nerologist has not dianosed me with MS yet.he did say i have demalnating disease of the CNS unspecified. ive been having a lot of leg and back pain.but my MRI of the lumbar spine show noe demalanating disese (disease) of myi spine. but they  my L4 L5 have degenrating of those areas of the spine. he put me on a nati inflammatory which only helped pain has goten worse. i am also have in really bad balace issues. he still wants to do a spinal tap to either diagnose  MS or  something else.im on vicodin for leg and back pain now which is not working to well either.

[whitewolf63]

my  issues after  i had gillian barr syndrome .after that this is when everything started.y vep was alo positive but my brain signal is slow bilaterally. i have demalanating bilateral in my frontel lobe with some cortex involvement.they have diagnosed me with demalanting disease of the CNS unspecified

[jensequitur]

Hey, whitewolf!   Welcome to the forum.  You've posted to an old thread, which happens all the time.  You'll get more responses if you post in a new thread, rather than into an old thread.

However, it looks like they at least are looking critically at your symptoms.  I would get an  MRI of the thoracic spine (can't have lesions in the lumbar) and an MRI of the brain.  Be sure to get a 3T MRI of the spine - lesions on a 1.5T are very hard to see.

[Personaltrainer9]

I had an MRI done and the same day I felt exhausted and a headache and now it's the 3 Rd day and instill got a headache and feel heavy in my head! Is this normal, and how long does this feeling last?

[druidtrekker]

since 1997 I have exhibited MS signs and I have many Neuro's  send me for one test after another and sometimes they see lesions and sometimes they do not.  I have been told both that I have MS and sometimes that I do not.  I am presently on SSD because of Ms.  My problem is I do not know what do believe. I have alot of the symptoms, weakness, depression, fatigue, memory problems, cronic (chronic) pain.  At times I can't get walk or feel my limbs. I have what I call needle pain. my legs feels like thousands of needles are jabbing me at the same time feeling like electric shock is going on.  At times I also stutter or loose my train of thought in the middle of a sentance.  YES, I get attacks too and I can feel when they are coming on or while they are coming on.  I presently walk with a cane sometimes because I can get my balance.  Eyes get blurry vision at times.  I also have urination concerns because I do not know at times when I am finished.  I feel as though I am getting worse.  I had bells palsy in 1980 and I do get attacks of that sometimes although not as much thses days.  I was told that that might have been a first sign of MS but doctors did not know that much at that time.  I am a 49 yr Male and I have been struggling with this for a long time.  I guess I am asking what to believe?  I now want the doctors to start giving MS meds instaed of all the pain killers I am now, along with the sleeping pills and such.  I have an appointment with yet another Neuro how do I address with him.  The reason I have a new Neuro is that I have moved to another state.  Can someone please advive me?

[lovelife82]

hi guys iam 29 years old and  have my own buisness was healthy ,married women then last year i had been getting pains in my left eye , noticed like a fog over my left eye which was about 3 weeks still  got worse i thought was alergys then i had enough and whet  to the hospital they said i had optic nerutis as well and i was still in shock as i didnt know what it was ,
then had a whole heap of MIR s and blood test which i had to see a neurolegest as i seen  him he told me i have 2 lessions on my brain and that i have a choice to see weather i might have Ms to have a spinal tap which is a test that they do a needle under a   local anesetic to see weather i have it my mum was telling me to have it done and see weather i have it as i had optic nerutis and sleeping all the time bad depression , pins and needles and headaces stiffness in my neck and back and as having lost my eyesight for 3 weeks really scared me so having to ease my mind and my family i had a spinal tap done in the hospital book it with my neurolegest as i wanted to know now as i new thier was change in my life and how sick i had been so waiting 3 months to get my results i have been told i have EARLY stages of MS as my neuroligest wants to give me another MIR in 6 months to see whats changed in my brain iAM mild at the moment and seeing a naturaulpath changed my diet to the term  rabbit food greens no fatty foods like chips and takaway unless healthy also water drink that instead of soft drinks iam on 100,ooo mg vd vitimun sacat that my neauro gave me to take get my vitaamn d levels up in a drink its fantastic stuff but as your neuroliest about it and kroll x6 fish oil capuauels for my bones as my vitumn d levels very low and thats also sighn of ms if been tested for so i would sugest your son to have a spinal tap to get the real answers if he will go have it done it will be able to  make his life and your life easer by gettn help if it is ms and have some help to make him feel better which i hope he dose iam gettn better and all i say is have a great neuroligest and a naturaul path they really help you are not alone guys hope this helps with gettn the real answers live your life dont let ms take your life over u can beat it see ya lovelife82

[belduc]

I usually try to stay away from these discussions but it just breaks my heart when I know a fellow sufferer has the "what if's" because they didn't get the MS medications "early". I have been diagnosed For 13 years now, have had symptoms for sure for 20. Because I had no MRI lesions, I chose not to take the medications. I also have a good friend with definite constant progressive MS who is an MD with MS, that chose not to take what he calls "the poisons". He got diagnosed maybe a couple of years before me.

I am a veteran, so I became a member, and membership and public awareness director of PVA (Paralyzed Veterans of America) where I have met many many people with MS. Doing that kind of work also exposed me to information, research and specialists that normally most people with MS don't get access to. As my MS status got to be known throughout the years, more and more people with MS, military and civilian, came into my life.

Now to what I wanted to share with you. After all these years I've seen and personally known an unusually high amount of cases, their experience and choices when it came to treatment. After more than a decade, this is what I can say:

Sadly, I have seen no difference between the people that chose to take and stay on the MS medications and the ones that chose not to.

This is the importance of having this comparisons that are not part of trials or official research groups, but of the "average Joe" experience of living with MS for twenty years and diagnosed for over ten. Way back then, like many others, I decided to take the risk and wish for the best. That decision turned out to be of great importance for the future of MS treatment because we can see now and will be able to see, as more and more time passes, what the true benefits of the treatments are.

We will continue this potential sacrifice so we can, without a doubt, say you have nothing to fear or regret with the delay of treatment. Chances are you would not be better or worse if the treatment was available to you from the start. My message is clear and one and the same for all who live with MS.

Follow your heart. If you want to try the medications, go ahead, your experience is of extreme importance. But please don't worry about the "what if's". You haven't missed a thing by starting your treatment "late".

Stay strong.

[yorkieville]

I am 59, and I  have MS without visible lesions. I was diagnosed, on 11/09/2011,  struggling for 6 years.

In 2008, my former Neuro dx'd me with MS but theretractedcd thDCDX because he didn't want to "label me, because it was for the rest of my life."
Duh. No kidding. My 2nd cousi, Erv, lived with MS for 18 years, before he died in 2008.

I was fortunate enough to have been referred to a wonderful Spine Specialist to a top MS Specialist. She doesn't take patients that have not been diagnosed, but he spoke with her personally, and she agreed to see me.

My D.O.'s nurse prepared me for the appt. She told me to make a list of every symtpom, and not disregard it because I thought it was insignificant, because it could be significant to her.

My symptoms actually started in 1998. But they became very severe in 2005, and I spent two years on the couch with such severe nerve pain in my couldn'tI coudn't sit, stand or walk for very long.

My MS Specialist told me the most important paperwork that I broSTt to my 1st appt. was my symptoms list.

I tried Copaxone-was allergic to it.

After several weeks of blood tests to make sure it hadn't done any damage, I began Rebif. Due to my size 5'2, 74#s, I can only tolerate 22 mcgs.

Sheila

[Kandi2977]

Where is the official page in this source book that I can print out to show to my doctors? The MS doc I saw refuses to admit that I could have MS even with no signs of lesions on my MRI, and no O-bands in my LP. I tried to explain that it was too soon to say that it is not MS, but she dismissed me. I'd like to have an official page printed out on my next visits to any specialists. Thanx.

[uofmiamikf]

My husband was diagnosed with MS in Jan 2012. It first started with Optic Neuritis w/o lesions in 2009. No diagnosis given b.c no lesions on MRI anywhere. Then 2.5 years later a flareup with numbing in neck and arm with 2 spinal lesions, still no brain lesions. We had two Neruo's (Stanford VA and Michigan VA  (UofM MS Specialist) tell us it is very abnormal to not have lesions on the brain, but were never the less diagnosed after spinal lesions.

[lissyG]

Hello
I am having some problems. I feel like sometimes I can barely get out of bed. Sometimes especially over the last few months by neck pain and discomfort is so bad I can't function. Usually these symptoms come with a headache or migraine.I feel like I am in a fog. sometimes I have random joint pain too. I saw a dr for my neck pain and after a MRI of the cervical spine was told I just had some bulging discs. Then just about 2 months ago I noticed tingling and numbness in the toes, finger tips, face and weakness. I saw my neuro who I see once a year for migraines and she sent me for a brain MRI that she said was normal. Since then the symptoms are still coming on and off but now I have difficulty swallowing. Sorry to be gross, but it feels like I have mucus stuck in my throat but, I'm not sick. Also every so often over the last year I'd get some symptoms consistent with panic attacks. I get the difficulty swallowing followed by headache and weakness but then it goes away within minutes.Mind you I agree with My PCP, I have reasons to have panic attacks and stress if thats it. I mean I work full time at a busy call center in a very stressful job. I also am the mom a a 7 year old autistic boy who is my world and I very beyond involved however this time my symptoms of difficulty swallowing haven't lasted 20 min like what my dr said were most likely panic attacks.This has been non stop for three days. I cant even fall asleep. I feel like I cant breathe from how uncomfortable my throat feels. I really cant help to wonder if all these symptoms are related to each other especially since the numbness and tingling was just one month ago. I really just want to feel good! HELP

[lissyG]

by the way I am 34, Since I didn't mentioned that. Thanks!

[lissyG]

wow I keep remembering things now. Also having some pain or discomfort
( on my bad foggy days) like behind my eyes, really I think my left eye. I appreciate any suggestions...

[shannon2732]

can i have the number to your neurologist please i have been suffering for yrs and my neuro believes it has to come positive with lesions for you to have MS, i have twitching pins n needlies in legs get very stiff trembling in hands migraines and def shut down before weather changes, it gets so bad i cant get off the couch and am in tears almost everyday

[Ricobord]

Please make sure you get checked out for Lyme Disease by an LLMD, a Lyme Literate Medical Doctor.  You will want to get tested at IGeneX, as many other labs produce way too many false negatives.  Lyme can mimic MS and a negative test does not exclude it, as in my case. You'll want to do this before you take any immune suppressing medications for possible MS, as steroids can make an infection much worse.

[jackie388]

I believe you should get a second and third opinion. It wouldn't hurt.

[josephine418]

You might want a neuro to check for seizures.  Good luck!

[xxxtina]

B6 TOXICITY - mimics the symptoms of MS.  In every way.  I was going crazy, convinced I had it.  The tingling turned into weakness and inability to walk, or hold things.  

It turned out to be B6 toxicity.  Everyone should look into that.  It is not a common diagnosis.  Those vitamins need to have a serious warming label on them.  

[xxxtina]

http://www.livestrong.com/article/317889-vitamin-b6-toxicity-symptoms/

[Christof60]

I am at my wits end and am just about done with the horrible Medical field. I was told by 3 Cardiologists there was nothing wrong with my heart- 4th GOOD Cardiologist at May (who REALLY listened to me) spent some real time on my case, found a rare anomaly and repaired it. He told me I was within weeks to a month of dying.
Then, same story on unexplained abd/testicle pain, everyone said nothing's wrong. Wonderful Surgeon at FSU believed in me, did rarely approved exploratory- Small bowel resection and scar tissue removal. Pain resolved.
But my symptoms of anorexia, chronic nausea, and now visual disturbances, balance problems, swallowing difficulty (thin liquids), visual disturbances, loss of muscle mass not due to anorexia (I eat high calorie food, lots of Boost, etc), and intermittent tremors, numbness and "body" zaps like I'm being shocked ( but not painful). Memory lapses, and extreme heat intolerance (heat NEVER bothered me in past)... PMD thinks maybe MS, but I cannot have MRI. Neurologist (horrible little Pakistani man, horrible) asked me my meds, belittled me for using walking aid, and had me squeeze thumbs, touched each knee (do you feel this), had me walk 10 ft., and even though he witnessed my tremor of left hand, states "You don't have a neurological problem, you don't have MS".. He had not even read any of my charts or history. I walked out on him and scolded him that "yeah, I left a Nursing job making $80k/yr, and was always active (very physically fit and in better shape than most 30 yr olds) just so I could sit at home and draw $1500 SS, and he says back "some people simply want to have an illness".
How do you fight that? I'm slowly withering to nothing, have absolutely no life, and cannot even shave/shower without having to lie down afterward.
Maybe it's just horrible healthcare in Florida, but I need to find out what's wrong. I want my life back. Many live full lives with MS.
But what else can I do?
On a bright note, my new PMD (I fired mine from last 3 yrs) found I have no testosterone in my system, so that will help many symptoms I'm sure. But low "T" doesn't explain most of my symptoms.
I forgot to add that I "piddle" and have to wear diaper, but cannot void unless I have at least 500 cc of urine, and even if I void at 11pm, drink no water during the night, I have at least 800 cc's of urine at 5am, often 1100-1300cc's, yet do not even feel like I have to pee.
Never even got to tell Neurologist that.
I do have Morphine pump that goes directly into my spine (emaciated and bedridden for 2 yrs, 155lbs down to 109lbs caused severe spinal stenosis (inoperable) and didnt want to take oral pain meds, thus the pump.
Neurologist first question to me was what meds I was on, and as soon as he heard morphine pump, that's when he apparently concluded I was a druggie and malingerer.
People who know me know that is not me. I want nothing more than to get my old life back. The good job, the money, the active lifestyle...
Any advice, information, or referrals to outstanding Neurologists in the Central Florida area would so very much appreciated!

[Michelep74]

I am 38 year old female. Almost 2 years ago after th birth of my 3rd child, I had a headache for 4 months. I have always had headaches. I also had neck pain. The dr thought maybe it was a spinal leak from epidural. Sent me to neurologist who did MRI. Came back I had 4 ruptured discs in neck. Met a pain mngt dr who suggested injections. Got a round in June 2011. Felt pretty good for almost a year. June 2012 noticed severe neck and head pain. Had shoulder pain and tingling in neck. Did another round of injections but they didn't seem to work.  2 months later i was miserable. August 2012 saw neurologist again. Pain in head, neck, shoulder. Blurry right eye and some pain. Pins and needle feeling in both hands and feet. Weakness in arms and legs. Joint pain at elbows and knees. Extreme Fatigue. Body feels so tired and weak. Had 3 MRI's with and three MRI's without contrast. No lesions. No active dymelinating disease. Saw ophthalmologist. Optic nerve looked fine. No problems. Currently neurologist wants me to complete more blood work, have a spinal tap, see a rheumatoid specialist in case there is an autoimmune disease present that is mimicking MS. I am seeing a neurosurgeon next week for the neck stuff. I also need to schedule VER test. I feel my neurologist is on top of this and she deals with a lot of patients with MS. It is hard to be patient when u r so miserable. I want answers but realize the process of elimination has to be done until there is a definite diagnosis. I feel my neurologist believes it is still MS. If my spinal tap comes back ok and the VER test is negative for MS ... What th heck could it be? Is there anyone who has had all of these tests come back negative and still have a diagnosis of MS? Michele

[Mammy2819]

Not sure whatever happened with your condition, but Dr. David Mattson is an excellent neuro.  Look him up!  Indiana.

[maralact]

I asked for help  which I believed to be on the same forum as this one, yet comments stopped in 2009. I don't know if you have access to that or if I have to repost. Please let me know.

[kwarendorf]

Hi-  This is a rather old thread. It was started in 2007. Quix, our former resident MD, has moved on to other things and is no longer participating on the board. You might want to post a new question. While there are no doctors, there are lots of really smart folks here :-)

Kyle

[maralact]

In 2009 I got my first flu vaccine (H1N1) and a few days after that I developed symptoms in my feet and legs, and worked their way up to my hands and face. Got IVIG treatment, and got better. I retained some numbness in my left palm, but it wasn't present all the time. I went back to my workout routine which my doctor approved. In August 2010 symptoms returned, and as treatment was not immediate (docs seemed to be puzzled,) I started experiencing more nasty things: muscle twitches and cramps, heavy legs, inner tremors in my hands. Eventually, they put me on another IVIG treatment in late November, but it didn't do the magic of the previous one. I also saw a homeopathic doc around the same time,so when I finally got better again I wasn't sure which treatment kicked in. In 2011 I was Ok for a while, and then worse again, but didn't seek medical help as I wanted to avoid the unpleasant experience I had with them. I took Lorazepam 0.5 mg when needed, and marched on. Every time I got better I was tempted to do things as before, walk more, l

[maralact]

I must have pushed the wrong button, so I'll go on with my story. I never really was the same as before. What triggered my symptoms was physical exertion and longer showers or hot baths. My neuropathy was all overmy body, scalp included. I worked around those issues and 2012 was altogether a better year. Encouraged, I started working out again (but nothing compared to my healthy years,) and by late September symptoms came back with a vengeance. I developed a stubborn twitch under my left eye, iritis, more numbness, a knot in the throat, itching, insomnia, and the list goes on. I am seeing a different neurologist, and she believes that bases on my symptoms I might have MS. My MRI , EMG test, and neuro exam were fine. I'm scheduled for LP next week. Blood tests showed nothing spectacular aside from an elevated platelet count (650 for a max. Of 400, ) which I've been having from 2004. The doc believes that an old inflammation in my body was excited by the vaccine and caused all this. I did some reading, and found no instance of vaccination triggering MS. I need a fresh eye, a look outside the box. When more complex things develop, doctors have a tendency to sent you from one specialty to another, but none is willing to look at it in a comprehensible way. An input would be much appreciated.

[maralact]

Thank you, Kyle, for being so quick to respond. I've read posts before, but I've never participated in any. I guess I'm just tired of telling my story again and again. I've seen my share of doctors, even wrote down for them a chronological recount of my symptoms, and I still don't have a Dx., hence no treatment. I barely feel my legs, and when I do it's mostly burning pain. Hands are getting there as well. For this day and age,to say nothing about the research done in this country alone, I (and many others) shouldn't be sitting numb without a Dx. for such a long time. My question for Quix was pretty targeted : has anyone been diagnosed with MS after a flu shot? All hell came lose after my H1N1 vaccination in 2009. I particularly seem sensitive to physical exercise and hot water. My doc says the hot water strongly suggest MS, but do the muscle twitches do too? I read somewhere that in spite of being an autoimmune disease, MS does not respond to IVIG treatment. My initial treatment with it worked. I'd like to make sense of all this.

[OkRad]

My first reaction was after the MRI dye gadolinium. It can be toxic if the chelate breaks and apart of often does. There are a few tests to see how much Gd you have retained. Most Drs will not so them. Maybe these tests are causing MS like symptoms.

[pastordlj]

Yes, I too am a 47 year old male. I have these symptoms plus many, many others that come and go. The Dr.'s and Nero. all have done many tests including spinal tap and MRIs but still tell me nothing is wrong. Yesterday and today I could not go to work, tingling hands, electrical impulses in feet and hands, dropping things, hands jerk, facial numbness and tingling and swaggering in walk and difficulty walking...mind foggy. Still Dr's unsure what is wrong...

[depuppy3]

Sounds familiar. Been 2 years of the exact same things. Dr's don't want to make a diagnosis. The last 46 yrs I have been fine and working hard and many hours, and now I can't function even in my own home. Easier to blame the patient I guess.

[jpw37]

I signed up b/c of your post...what is the name of your doctor?

[immisceo]

Hi there.

This post is kind of a golden oldie. Patti hasn't actually posted on MedHelp since 2008.

There are lots of currently active members though, so if you'd like to start a fresh thread and post a bit about yourself, I'm sure you'll get lots of feedback. Alternatively, if that's a bit intimidating to start (though we're pussycats, I swear) have a look at our extremely helpful Health Pages. http://www.medhelp.org/health_pages/list?cid=36