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Avatar universal

Negative MRI

For the past 10yrs I have had many symptoms that really resembeled MS.  But 10yrs ago I was told anxiety problem.....I accepted that and moved on.  Well 4 yrs went by and I started getting bad dizziness ( off balance) and much pain in my back and hips....went to another DR, DX'd with Fibro and Oesteoarthritis in my lower spine.  Last year the pain got so bad I went to get help.

I made an appt with a Rheumatologist, he is NO GOOD!!!!!!!!  He confirmed my Dx of Fibro, when I would mention any neurological problems like the off balance or the eye problems ( off and on while I'm in the shower the water will look like shooting stars or balls of fire) he would blow me off and say you just have FIBRO nothing else!!!!!!!!

I made an appt with a Neurologist 2 weeks ago..........he sent me for a Brain MRI and a MRI of my C & T spine,......well my insurance approved the Brain MRI but not the C & T spine MRI.  They called today and said my Brain MRI was normal.  They are now going to see if they can get the C & T Mri approved.  I also have an EMG scheduled for Aug 3rd.

How many have Negative MRI of the brain and still have memory problems, off balance and just the general feeling of your head feeling out of it at times?

I'm hoping they approve the other MRI's........but I think no matter what happens I'm going to go to a MS specialist.  I would believe them more if they told me I do or don't have MS.

After 10yrs I want answers!!!!!!  If its fibro so be it, I'll continue doing what I have, I just need to make sure that MS is ruled one way or the other.

Any information from others who have gone thru this process would be invaluable.

Lisa
12 Responses
Avatar universal
MS is diagnosed primarily from the clinical presentation of syptoms typical of MS and a Positive MRI.  Unless you complained of senory or weakness issues below the neck, I'm not sure why an MRI of the Spine.  Have you had weakness in a limb that came on suddenly and then days or weeks later got much better?  Have you had numbness or tingling?

The synptoms you have described or not specific to MS, very general.  With a clear MRI you likely will not get a DX of MS. The eye thing is strange to only happen in the shower.  Do you bath first thing in the morning when you get up?  Is the water extremely hot?  and you run on face and eyes, thats really odd.  Optical Neuritis is more persistent than that and affects the field of vison, not "shooting stars" per se.

Well I'm not an MD, just a MSer.  From what you have describe I would be very surprised if it was MS.  I don't know Fibro, but is that DX hard to accept or inconsistent with your symptoms?

Good luck!
Jon
Avatar universal
In order to get a spine scan your insurance might not approve it unless you have PT for your neck/back.  My neuro sent me to PT without even knowing what my insurance needed...he told me to "just go" so the scan would be pushed through.  

Check into that and maybe you can get the scan you need by going to PT.

And fibro is so easy to diagnose from what I understand.  My neuro ruled it out in about 30 seconds.

Keep trying!!!

Wanna
Avatar universal
He is doing a C & T scan due to the fact that on my left foot 2nd toe it goes numb, we don't know why, also my right thigh will also go numb.  For 9yrs after the birth of my last child my left breast has weird electric shocks with tingling and pain, if you touch that area in my back a really sharp pain will go thru to the breast.  Also Ive had episodes with water when I put my hand under the running faucet and it is on COLD it will feel like its BURNING HOT.  I will put my other hand in and it will be normal.  Do the other hand again and again it feels like Im being burned!

I didn't write down all my odd symptoms I didn't want to ramble on, but Ive had numbness in my scalp/face.  Tingles in my hands/arms/legs.  Also I have episodes of Burning Tongue.

I would have felt better about my Fibro DX if they would have ruled out MS first, the two mimic eachother very closely.

Funny, everyone on Webmd feels that MS IS my problem.  Also they told me that many don't have Abnormal brain MRI's but they do have lesions that show up on their C & T scan.  Guess this disease is very different to everyone.

I have had PT for my Fibro, that was in January.

I appreciate your replies though
Lisa
Avatar universal
Lisa, I know this doesn’t make sense, but no matter what the reason you need the spine scan, still look into the PT and you might get the scan approved.  My neuro is looking for MS lesions but some insurance companies have a protocol, even though the doctor has a reason for the scan.  When my neuro told to me “to just go” to PT, what he meant was “play the insurance game so you can get your scan.”

Our health care system is what it is, and you have to play by their rules, play.  

I too have many MS symptoms, as well as the list of other illnesses, but I have resigned to playing by the rules if I get a diagnosis and treatment for something.

Have you done a time line yet?  

Wanna
Avatar universal
Yes I did the time line, I actually took it to the Neuro appt.  My Rheumatologist sent me to PT this year.  My Neuro said nothing about PT to me.

My neuro's office thinks that they wanted the Brain MRI before the insurance would approve the spine mri.  I guess I'll find out next week.  The office said that if I dont' hear from them by Thursday to give them a call.

My time line isn't as exact because many of these episodes happened 10yrs ago.  But the latest ones I was able to be more precise with.

I also have an appt with Pain management next Saturday.....I really want relief, if I get some relief I think the waiting game will be a little less stressful.

Lisa
Avatar universal
Don't worry that your memory from 10 years ago is vague.  When all this started happening to you there might not have been reason to keep track of everything, and that is fine.  What matters, I believe, is that looking back now you can pinpoint when it strated.

Pain and fibro do go hand in hand, but I am not certain about all the other symptoms.  Has the doctor (s) ever really discussed Fibromyalgia and a definate treatment o have you just been blown off?  

My memory is not that great, but I know we have talked before...I think.  Have we??  Anyway, it seems that I haven't seem you post for awhile.  Forgive me if I have that all wrong!  Ya know, head fog and all.

Donna




  
Avatar universal
I was Dx'd with fibro, then confirmed by a Rheumy......he isn't doing much I had PT once, and they gave me a booklet to work on it at home.  He put me on Elavil and Darvocet......Elavil worked for my sleep for about a week now it does nothing, and the darvocet is like taking a tylenol!!!!  I only wanted Darvocet for my Flares and my menstrual time, thats when its unbearable!!!!!

The Neuro said he didn't believe in Fibro, but since my Rheumy never answered his phone or really treated me at all I decided to see a Neuro.....first question I asked when I called to make an appt was does this Dr take care of Fibro patients, they said YES.........but how can one treat something he doesn't believe exists????  I do not understand that.  He said MS.........I think we have talked before.

I was previously in March on the Gastro board.......I had and still have stomach pains, thought I was having appendicitis, but after the CTscan w/contrast/sonogram/colonoscopy/blood work all was fine and I was given the DX of IBS!!!!!!!!

When I mentioned my dizziness/numbness/memory & concentration problems my Rheumy went off saying all you have is FIBRO!!!!!!!!  Well yes fibro does have all these other problems but he didn't want to get into them........thats why I went to the Neuro

Lisa
Avatar universal
The first tiem I posted was on 7/04 so our encounter had to be very recent.  

When is your next neuro appointment?  Does he seem to tak eyou seriously?

Donna
147426 tn?1317265632
Hi, Hope, I've been reading your posts here - and some older ones on other forums.  I hear your frustration with having so many disturbing symptoms for so long, being brushed off by doc's that aren't listening to you or  trying to put the whole picture together and by hearing different things from different people about MS and how it is diagnosed.  I don't know whether we can help much, but if you don't mind, I'll throw my in two cents worth.

The first thing I'd like to ask if you have been thoroughly evaluated for celiac disease?  I suspect you have with the history of endoscopy.  But, with the history of recurrent abdominal pain, neuropathy,
CNS symptoms, joint pain, and dental problems, I had to ask.  Celiac is one of the commonest, and yet most overlooked, of all the autoimmune diseases.  It mimics MS (even can have similar brain lesions), IBS, Chronic Fatigue, and especially mimics Fibromyalgia.  One of the commonest misdiagnoses - meaning people have celiac disease (estimated at more than 1% of the population) but are diagnosed with something else.  It is diagnosed by biopsy on endoscopy and by blood antibody testing.

About your "rheumy" - As the others will attest, my motto is "Blow off any doctor that blows you off."  It's takes a special kind of arrogance to tell a patient with additional unexplained symptoms, that they have ONE THING and NOTHING ELSE.  Sheesh!!!!  There are a lot of rheumatologists in the world and you need a different one.

The neuro was right.  To rule out MS the process begins with a thorough neurologic exam.  Did he find any abnormalities on yours?  If the history is suggestive of MS the next step is an MRI of the brain, C-spine and T-spine all done with and without contrast.  The contrast allows them to distinguish which lesions are new, actively inflamed and demyelinating.  You are correct.  Many people with MS have no "visible" lesions in the brain, but will have some in the spine.  I am sort of one of those.  Many others will have just the reverse.

If the MRI can't give the diagnosis, then the next step is to look for diseases that mimic MS - that is other things that cause disease in the white matter of the brain.  That is a series of blood tests  for things like Lyme disease, lupus or other autoimmune disorders, syphillis, HIV, HTLV I & II, clotting disorders which may be causing mini-strokes, B12 deficiency, and in the presence of anemia, ostoeporosis or abdominal complaints, celiac disease.

If the MRI's are all initially negative or the lesions not typical for MS, then the next step is usually Evoked Potentials. The two that are most helpful are Visual Evoked Potentials, looking for evidence of prior Optic Neuritis and SomatoSensory Evoked Potentials which evaluate sensory neuropathy (the tingling and abnormal sensations people with MS often get).  If dizzinem in the braiess is present an ENG - ElectroNystagmoGram can sometimes show if the dizziness is caused by a problem in the brainstem (as in MS) or if it is from the inner ear (not MS).

Sometimes an EEG will show slowed or blocked conduction of brainwaves.  It is not very sensitive in pointing directly to MS, but can show evidence of brain dysfunction.

If more evidence is needed the next step is the spinal tap.  I think I read before that you refused this.  I had my last one done by the radiologist under fluoroscopy guidance and it was a painless breeze!

If there is muscle weakness or sensory complaints tests can be done to test the nerves and the muscles.  These are called ElectroMyoGrams (EMG) and Nerve Conduction Velocity studies (NCV).

Finally, if the symptoms still seem like MS, but there is not enough to make a diagnosis, one must wait and repeat testing (especially the MRI) after a period of time.

Online it is hard to diagnose someone.  We only have a little tiny window through which we see you and we see only what you tell us.  You used different words probably when you sounded out the people on WebMD.   It's like the five blind men describing an elephant.  They report what they are able to "see."  You will get different opinions as to how "MS presents" from different people because here you are talking to patients.  People speak from what they have experienced and what they have learned.

Diagnosing MS is truly somewhat of an art.  Regular neurologists tend to lean heavily on number of lesions seen on MRI.  Many don't even order the spinal imaging.  If the diagnosis does not jump out from the beginning patients often get dismissed as "crocks."  We here know this all too well - seems you do, too.  When the diagnosis remains elusive you are best off to go directly to an MS specialist.  The ones in your areas can be searched for by contacting your local MS Society.

But, right now, you are on the proper path.  Sorry about the insurance hang up with the spine MRI's.  That needs to be done next.  Can people with MS have negative MRI's?  Absolutely yes, but it is hard to make the diagnosis.  The MRI's do not pick up all the lesions.  That is known.  Each generation of MRI machines is stronger and able to see smaller lesions.  Most machines out there are older.  The newest ones have a stronger magnet (they are called 3T or 3  Tesla machines)  When I had my spine imaged on a old machine in February no lesions were seen.  3months later on the stronger machine and 6 old lesions showed up.

If you go to four different forums you'll likely get four different impressions of what the problem is.  I guess we would call that "diagnosis by consensus."

I'm sorry I've been long winded, but you seemed so frustrated I wanted to try to expalin why you hear so many different opinions.  I hope finally you can get the MS issue settled - yes or no.  I hope this has helped.  If I raised more questions than I answered, feel free to ask away.  I am a physician, but NOT a neurologist.  Just a person with MS who's learning as I go.

Quix
Avatar universal
Thanks for all of your input :)

Before I was Dx'd with Fibro I had all the blood tests run, HIV, RA, Lupus and on and on.  I never had an endescopy.......I had the CTscan/colonoscopy/sonogram and the DX of IBS.  I really don't have "dental" problems, my teeth went south after I had my first child.  Up until the age of 23 I never even had a cavity.  Then they went bad and no insurance they just fell apart.......so I went and got an Upper denture and lower partial.

The Neurologist said nothing about any other test beside the C&T and the EMG.

My main frustration is that I homeschool, so I really work inside the home.  I have 3 kids and a few years ago me and my husband made the decision to pull them out of school.  The education they were getting was sad.  Its really hard to teach 3 kids at different ages but when you have all this garbage going on it almost makes it impossible.  Luckily I can teach year round, so if I feel bad then I can take a day off, they get way more than the required 180 days.

I'm not sure if I have a good Neuro, he said I was either "crazy" had MS or it was ALL due to my smoking!  He never said anything about a followup appt either.

Thank you for taking time out of your night and replying.  I'm just having a very bad night.  The past few days I have been so positive, took the kids to the amusement park then we went to the caverns.
Somehow the good vibes didn't last to long.

Lisa
147426 tn?1317265632
I have a couple follow up comments:

Lisa : You surely did have dental problems.  When celiac disease appears, often preceded by childbirth, one of the first changes that may be seen is by the dentist.  The teeth often discolor and the enemal becomes defective so that the teeth cannot maintain their structure and "fall apart."    That fits with what you said happended to your teeth.  It is worth checking out.

The Rest of the Forum:  What several of you said about the urgency of beginning treatment is not wrong, even though I seemed to contradict it in my post.  Whether the need to begin treatment is urgent depends on the clinical status of the person.  If they are stable and between relapses, as I was, when diagnosed, taking a reasonable amount of time to adjust and look at the therapies makes a lot of sense.  However, it the symptoms are worsening, the person is unstable or active optic nerve inflammation is occurring then there is an urgency (with days) to begin appropriate treatment.  I just didn't want any of you to think I was changing my recommendations mid-stream.

Quix
Avatar universal
Well after all my checking the MS route I'll take a break then look into Celiac.  I was told by my dentist that I had very very strong bones, and my teeth were very hard and sturdy.  But with the lapse in Dental coverage I would have needed over 30,000.00 to fix it all!  That was never going to happen, getting dentures was my choice.  The reason my teeth went south was all due to me and my lack of care.  When I said they fell apart I didn't mean that literally lol, I meant that they were needing root canals and deep scale cleanings,lots of cavities and so on....they were all still in one piece.  

My dentist was upset with me because of the shape of my teeth, but I had to put all my money into my kids Dr's appts and dental appts they came above me.  He then shut his mouth lol  

I will ask my regular Dr about Celiac though based on your advise once this is over.

Lisa
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