Could I have MS with a clean MRI?

[overthis]

I

[essdipity]

Hello and welcome to our forum.

You have posted at the end of a long and very old thread, where few members are likely to see it. Please start a new post on the main page and tell us about yourself. When you do that, would you break your post up into very short paragraphs? The welcome message at the top will explain why.

Also, take a look at this forum Health Page:

http://www.medhelp.org/health_pages/Multiple-Sclerosis/How-Can-a-Person-with-MS-Have-a-Negative-MRI/show/161?cid=36

Good luck to you.

ess

[samcoch]

I am a 42 year old woman with two daughters, 8 and 2 years old.  When my first daughter was nearly 3 I had an episode where the centre of my field of vision went and after about 10 minutes it changed and I had no peripheral vision and it kept shrinking til I thought I would go blind.  I went to the accident and emergency and they said it was a pinched nerve in my neck. The doc cracked my neck! OUCH....I went home, feeling awful and next morning when I woke had the worst ever headache.  Told my hubby not to go to work and leave me alone with our daughter as I felt too ill to get up.  He called the doc and an ambulance took me to hospital.  I had a lumbar puncture and pain killers and went home.  I thought maybe I had some head thing from the lumbar puncture as I couldn't walk to the toilet without help - i just couldn't hold myself upright for long, felt weird.  Then I got bad vertigo so two days after that first ambulance ride I was back in hospital walking like a drunk and room spinning.  I was told the lumbar puncture I had previously had high protien - whatever that means?  Was in for a week and had all sorts of tests.  Strange sensation in my soft palate making me want to gag, felt weak all over, seemed like I was on a rocking ship.  Had an MRI and it was normal and when I asked again about the lumbar puncture they said it was normal and high protein was coz I was tall!  What?  I got sick of being in hospital so told them I was feeling better and went home.  I still felt like I was on a moving boat all the time then started having what I describe as freezing burn in my legs and feet and up one arm and over my eyelid and lip.  Went to a private neuro who said I was imagining things and should "get over it."  Was real mad at that.  After 8 months I came right and thought maybe I was imagining things!  last year it started again in January with vertigo real bad - vomiting, couldn't walk without help.  Went to doc and was told labyrinthitis.  Didn't buy it.  Kept going back as my left leg was going from under me and ended up in hospital again for a week.  As soon as i spoke to doc in emergency he said MS.  another doc looked me over and said same.  MRI came back normal so I was told i was hyperventilating and hyperchondriac and they sent the pshychiatric team to evaluate me.  They told neuro to look again.  He was not nice and told me I was wasting their time so I discharged myself even though other doc on ward asked me to stay.  Then my vision has started jumping and going double.  eye doctor says superior oblique myokymia.  I thought GREAT!  not MS and not life threatening but now I have spasms in my butt that are so painful and around my hips and down my thighs.  My calves go tight and sore and my fingers twitch.  Got aching jaw like I've been chewing all day, sometimes pain and ache in my face and when my left eye jumps around it feels like something inside my head banging on my skull.  Have had a buzzing noise in my neck and electric shock sensation in my neck and sometimes in a spot in middle of my back and I can't move for a few seconds.  My vision drives me crazy all day jumping and bouncing around and making me feel so dizzy and loud noises seem to make it worse.  What is this??? MS or what?  Why are my brain scans and lumbar punctures fine?  I don't know what to do.  My GP is just taking my money and doing nothing.  She listens and then says take this pill for the muscle spasms or take this to stop the vomiting and thats about all I get from her.  I need to know waht this is and what I can do about it.  It's sooooo frustrating.  I used to have a LIFE.  If i was imagining this stuff I would imagine it away.  I have stuff I want to do, not ly about looking for attention - I got kids to care for and a life to live!!!!  

[atino]

You and your wife sound like my husband and I. We are Army and I have been seen by base doctors many times with no results. When my face became numb and droopy I was told I had the flu. When I could not swallow, no one seemed to care until we started fighting for an answer, which we never got. Keep fighting, it is a challenge. Even though I see a civilian doctor, I am constantly fighting with tricare about something. Keep strong or your constant fight for care will make you crazy. I hope your wife gets the best care and they fing a diagnosis soon.
Annette

[Quixotic1]

Hi!  I am so glad you found this forum.  Your and your wife have literally been through Doctor H*ll.  I'm sorry that someone with obvious neurologic problems was told they were malingering or a psych case.  We see that all too often.

You have posted at the bottom of an old discussion and you deserve to be heard.  I invite you to post this (just copy and paste it) to the first page of the forum.  You get to the main page by clicking on "Return to Forum" at the top or bottom of the discussion.

There is soooo much to answer your question about how they could be looking for MS when the MRI was clear.  It depends on the "protocol" used to run the MRI test, the stength of the machine, the size of the lesions (if this is MS) and the skill of the radiologist and the neurologist in reading the images.

Please repost on the front page.  And remember that MS is not a diagnosis made from the MRI.  It should be far more dependent on the history and physical of the patient with the MRI used as supporting evidence.

See you there!

Quix, MD

[cat1203]

yes, you could.  some pick it up some don't.  i think it is all in who is operating the mri.  i had one a week before then came back for another and it was there.  

[Sunnytoday]

Hi! I just read your post, and I wanted to let you know that I too, take Topamax. Many of the new symptoms you mentioned can be caused by the Topamax itself.

please check out this site to see the official side effects that will most likely happen when taking this medicine. PLEASE NOTE! I think that she should keep taking it, especially if it is helping her, I'm not in any way suggesting that she stop it without talking to her doctor.

http://www.topamax.com/topamax/how-topamax-may-help--what-to-expect.html

Let me know what you think after reading this site! Perhaps if these side effects are bothering her too much, they can switch the medicine that is controlling the seizures to a better one that is fit for her body.

~Sunnytoday~

[Tahiri_Veila]

Yes someone can have MS with a clean MRI.  If you look to the upper right there is a link to the health pages.  One of the pages is about this exact question.  It is a question I had too when I first came here.  It is really helpful and explains it very well.  I can't say I completely understand but a lot of us here have also gone through some very weird symptoms.  I hope that page helps.  I think there might be another health page that explains what it takes to diagnose MS.  Hope it helps.
Tahiri

[Pops1200]

I forgot, yes the spasms are controlled for the most part.  They do however return if she misses her Topamax or takes it late.

[Pops1200]

I am active duty in the AF and so is my wife.  In July 2006 my wife started having what can best be described as muscle spasms. She was seen by the Dr's on base and sent to the ER off base.  When she arrived at the ER she was treated with Atavan and Cojetian.  The Spasms subsided and she was discharged.  At this time she was told by the ER Dr that she was making this up.  She was then seen back on the base still with no answer.  About 2 to 3 weeks after she was seen in the ER she began having Spasims again.  She was seen at the on base hospital and referred to an off base Nuro Doc.  After about 15 min with the guy he once again told my wife she was making this up and referred her to Mental Health.  When she was seen at Mental Health she was told she has a Tic disorder and was put on rispodal and Xanax.  The spasms subsided once again but she was also a walking zombie.   At this time we got a second opinion from a second Nuro Dr and she was diagnosed with partial seizers with the on set of generalized seizures.  She has been taking 175 mg of Topamax twice a day.  She has been ok over all spasms have been controlled.  Since she has been on the Topamax she has experienced short term memory loss, numbness in her hands and feet, and tingling in her hands and feet.  Within the last 3 weeks she has started to experience some numbness in her face and off and on twitching in her right eye.  She has had two MRI's and both have come back clean.  Today her Dr ordered some blood tests to rule out some things.  Her Dr said is her test come back clean she will start looking at MS again to see if my wife was misdiagnosed.  My question is can someone have MS if it does not show up on a MRI.  If so how can it be diagnosed as MS?

[Tahiri_Veila]

I have had some odd symptoms as well.  I have that tingling feeling that overthis was meantioning from about the waist down.  It also will spread up my back and in my fingers.  I have a sever burning sensation in my back and sometimes it hurts so bad that I cannot sleep.  This is because the muscles in my back are spasming.  I have also had some pain in my legs an arms but not near as bad as my back.  I also get very fatigued and it is worst in the afternoon.  The pain in my back has got so bad that I cannot stand or sit for long periods of time.  I have not been diagnosed with anything, but my doctors are still looking.  I had a clean MRI 2 years ago and was tested for Lupus, mono, shingles, and a bunch of other stuff which was all negative. I went to a neurologist who told me it was just stress.
This time around I went to a different doctors.  This is the second episode.  They have done new xrays and have tried treating me for arthritis and fibromyalgia.  Neither treatment seamed to help and the Lyrica seamed to make things worse.  The first time around I was given gabapentin which did help.  I have resorted to that again.  I was wondering if you guys have any suggestions.

[jenn38018]

Thanks Quix. I was just curious.  I have noticed being really jumpy lately, but it is probably from taking Ambien.

Overthis and T-lynn:  I hate to hear you are both suffering.  Sorry to butt in on your posting.  Take care.

[Quixotic1]

I was asking about the exaggerated startle because it is described as being part of the "Stiffman Symdrom" which we had been discussing.  No, it isn't really characteristic of a particular disorder, it is more a sign of heightened muscle tone.  People who are tense from anxiety will startle more easily - it's akin to being "jumpy."  Brisk startle responses are also seen in some neuromuscular disorders which have increased muscle tone or spasticity.  But, other things, like heavy caffeine usage, can make one jumpy also or coming off of a sedative-type medication can also have this reaction.  It's a non-specific symptom that can sometimes be helpful in teasing out a diagnosis.

Quix

[T-lynn]

My symptoms first started as severe spasticity in the legs,then came numbness,tingling,tight banding around the waist then a tight band around the left bicep.I had periods of numbness to my face.Blurred vision and hearing problems.I can't handle the heat it makes all my symptoms worse.

I had multiple MRI's,blood work,evoked potentials,EMG/NCS,.

The majority of these test were done at the cleveland clinic.

I was DX'd in Dec 2006 with MS.I've been on rebif,hospitalized in March for 5 days,had steroid treatment.I'm currently on anti-spasm meds.

[jenn38018]

Hey Quix,

I was just reading over this posting and became curious as to why you were asking about her startling easy.  Is that a symptom of particular neurological disorder?  

[overthis]

Hey Quix-

I haven't had any blood work drawn by the neuro, but my gp ran a full work-up and it revealed a slightly high CK and low b12 (150).

The Rhemotologist then ran a blood test after weekend rest and my ck was fine, but my b12 was still low (201).

After a Hemotologist visit they cleared me of a B12 deficiency.  

Other then that everything looks normal, but I'm not sure if they tested specifically what you are talking about.  Let me know what it would be called and I could take a look at my reports.

Hi T-Lynn,

Sounds like you had trouble figuring out what was going on too.  What were your sympotms?  Do you mind me asking?  

Thanks!

[T-lynn]

Yes,

I was DX'd with MS without lesions by an MS specialist at the cleveland clinic.
This was after all other possibilities were ruled out including CIDP.That was ruled out by a deep muscle and nerve EMG/NCS.most facilities do not do the deep muscle and nerve studies.Most diagnostic centers use the standard emg/ncs.

My MS was dx'd on brain MRI,stating cortical atrophy and widening of the cortical ventricals.Abnormal evoked potentials and a ENG/VNG a evoked potential for the hearing.plus the LP results.

Now with my current MRI's I now have visible lesions.

My experience with the road to a Dx was long and winding,with the right DRs they can Dx properly.

My reflexes on my left are hyper but the ones on the right are absent.

I suffer from severe spasticity,not a pleasant symptom,but with proper meds its controlled.

[Quixotic1]

I see why the neuro is thinking along the CIDP lines.  Did he run any blood tests looking for particular antibodies?  I am trying to learn all I can about this because it seems to fit many of the more "bizarre" complaints of posters here.  You know, the one's that make the doctor's eye's glaze over and they seem to stop listening?

If you would keep in touch and I'll continue to try to get info on this.  Quix

[overthis]

My neuro didn't say anything regarding rigidity or spasticity.  My reflexes were underactive (I'm not sure if that is the exact medical term). But I do remember him being surprised by that.  I don't startle or flinch easily.  

I've actually been very active throughout this.  I have always been athletic and for awhile I tried to rest and not exercise as much, but it seemed to make everything worse.  Staying still is very hard for me and is when I am the most uncomfortable.  It seems like being still or smaller intricate moves are harder for me Chopsticks (this may sound stupid but I love sushi!) and writing are practically out of the question.

I had been doing a lot of running up until lately but now I get such bad tingling in my right leg that I can't feel my leg (I have since backed off).  My neuro was surprised at how athletic I supposedly was when he finally did the strength test because basically all my major muscles on the right side were completely weak (and it used to be my dominant side).  

[Quixotic1]

Wow.  I've been talking to someone else about CIDP ( Chronic Inflammatory Demyelinating Polyneuropathy).  I can't say that I clearly understand it yet.  There are many variants on it.  (eg. symmetric vs. assymetric)  I suspect that some of the posters here with "bizarre" complaints may fall into that category.  I can't talk right now, but later I'll share some of my sites with you.

I agree, Stiffman does not answer your weakness and neuropathy.  So it is time to redo the MRI's and keep looking.  Your's, though is the only post I've read to complain of such remarkable muscular stiffness and the spasms. Usually when one thinks of severe muscle spasms they are looking a an underlying spasticity. This would make sense with both MS or CIDP, and not so much Stiffman.  Does your neuro think it is rigidity or spasticity?  What are your reflexes like?  I'm guessing  - hyper?

And do you startle (jump, flinch) easily?

I'm really interested in what you find out and I'm glad you're being re-evaluated.  I'm going to continue trying to learn about CIDP.  There are lots of sites on it.

Quix

[overthis]

Hey Quix-

Thanks for getting back to me!  You are so helpful to just give ideas to so many of us on here.

The Stiff Man Syndrome was very interesting to read about.  I would say that was my original symptoms, but it seems like it is developing into much more (twitching and tingling).  I am definitely going to keep that in mind when visiting my doctor because it is something I have never heard of.

I actually just had my first new appointment with my neurologist (first time I have seen one in a year).  There are definite weakness in my major muscles on the right side and neuropathy.  

He wonders if it might be the chronic version of Guillain-Barre Syndrome (CIDP).  At any rate he is getting MRI's done of my brain, spine, and my shoulder (he is curious if something else could be causing such weakness in my arm).  I haven't had my spine  looked at and it has been over a year since I had any MRI's so I get those done next week and hopefully we can figure out if it is MS or not from that.  He also has set up an appointment with a top neurologist (who doesn't take many cases) at our hospital since CIDP is so rare.  Which hopefully he is probably more knowledgeable of Stiff Man Syndrome.  

I would love to hear if you know anything about CIDP or if anyone else has experience with it.  

Thanks!

[Quixotic1]

A good MS specialist would say that one can have MS with a normal MRI, and that the machines just aren't sensitive enough to pick up the lesions.  That said, they can't make the diagnosis without a single lesion being visible.  If the spinal tap findings, the physical exam, the history (such as an episode of optic neuritis) and/or evoked potentials are suggestive enough, they sometimes begin treatment with a Disease Altering Medication (eg. Interferon) to prevent or slow subsequent disability.  This diagnosis is often called a "Clinically Isolated Syndrome" or CIS.  A regular neurologist (one that does not regularly deal with MS) is unlikely to make this diagnosis.

Have you looked into "Stiff Man Syndrome" properly called "Stiff Person Syndrome".  This is characterized by progressive stiffness in the back or limbs. And causes very painful spasms of the large muscles.  It is said to begin in the muscles of the trunk spreading then to the upper limbs and then sometimes downward. I don't know much about it, but it sounded like something you might want to read or do a search on.  There are also other neurologic disorders of stiffness.

Do you startle easily?

Here's a couple links: the first is the most complete - written for physcian's

http://www.emedicine.com/neuro/topic353.htm

http://www.med.yale.edu/neurol/programs/neuromuscular/stiff_man.html

Good luck, when I can read more, I'll look at this, too.  It was very interesting.
Let me know what you think.

Quix