Advice for followup on MRI needed

[sued1974]

I am 37 yrs old, a teacher and generally have had great health despite horrible sinuses (5 surgeries).  After my last sinus surgery I experienced a lot of pain and had my first MRI (week long headaches/migraines).  On the last day school I came home to chills, fever & b/c I already had a headache and neck stiffness the doctor referred me to the ER.  My right leg was also very stiff, and I couldn't bend my knee back (stretching it towards butt for lack of a better way of saying it) and the leg was giving out. They treated me for migraine, ignored the rest & I went home & was better.  I did have my doctor order a Lyme test though & he included other autoimmune type tests..

About 2 weeks later I experienced true vertigo (sitting - spinning).  ENT nurse said a virus.  I rested & just had extreme dizziness (not spinning) / lightheadedness and a week later at my appt they gave me a VNG to check the dizziness that persisted (sitting, standing, driving, laying, etc).  The test showed poss. central & peripheral abnormatlities so I decided to go see a neurologist who gave me Nuvigil (diagnosed as having narcolepsy 3 months prior).  By the time I saw him (early Aug) I had developed tingling in my left hand, arm, foot & toes. I also had two brief instances of double vision (one eye closed / opthamalogist checked me out and said to see neuro).  I also recalled that the previous yr I had fallen numerous times (while teaching), lots of tripping while walking & talking, bumping into door jams, etc.  I did a romberg test prior to my neuro exam & realized - wow I can't even stand still w my eyes open or closed w/o swaying & falling. I also had jolts of pain in my fingers (quick) & quick stabs of pain in head (much different from previous headaches)   And finally,memory issues - forgetting my address, phone number, forgetting words, etc... Much of this I attributed to perhaps clumsiness and/or just getting older (I had stiff knees going up/down stairs but I am approaching 40).    

Needless to say before I even got to my vertigo/dizziness issues the neuro was dismissive of the vng test and said my two sided migraines were not migraines.  
He said my neuro exam was normal but sent me for a brain mri (w/ and w/o contrast b/c I asked) & a blood test4 for myasthenia gravis.  I tried to get a spine MRI but he must have said no.  Anyways, the next day I was feeling frustrated but luckily I had an appt with my PCP doctor.  He was great.  The intern took three pages of notes and they looked at my blood work from the week before.  He is the one that said the word that was the elephant in the room - MS.  And at that point I felt better as I knew there are so many mimics.  As a teacher I love to research and it is more intellectually interesting to me and empowering to research and have an idea of what was going on.  I knew it could be anything from Lyme to B12 deficiency to whatever...  

So since my B12 was borderline low (420 I believe) we began injections (weekly) and I said - hope it works!  I had also started taking D a couple weeks prior.  I just want to feel better - I was on summer vacation and also have a three year old.  Mind you, my fatigue was extremely disabling.  I could only do about 1- 3 hours of being out and about before feeling like death.  And that was after sleeping all night and resting all day!

So, about 2 weeks prior to work beginning I noticed the tingling was moving to my right side.  More so in my fingers and toes.  I'm not so sure it is even every finger like it is on the left.  I still had dizziness (but less severe - but can't be on my feet for more than an hour).  And I also have tingling still on the left (sometimes it goes all the way to my hamstrings).  I also began experiencing jerks of my left leg while sitting and/or recling watching tv.  One time I was laying watching tv and my leg completely shot up in the air - but mostly it is a quick jerk.

Last week I began to have days of severe joint pain (fingers).  It came and left in two days and now I get more stiffness and jolts of pain.  After a B12 injection the PA saw me & began to ask if I was anxious or stressed -3 times.  I basically explained that yes - right now I was anxious but only b/c I had to go back to work and teach on my feet and between the fatigue, dizziness, etc.. He sent me for another Lyme test, and a couple other things.  He also ordered a MRI of my cervical spine.  I asked for thoracic & he agreed as it would help ease some of my concerns.

Here are my MRI results (1.5 Tesla high field open mri):

Jan 2012 (for head pain) brain mri - Normal except findings of sinusitis.  minimal high signal surrounding the ventricles - impression early small vessel changes, migraine, etc... This test was w/o contrast.  The mild increased signal was on FLAIR.

Aug (Brain ww/o contrast):  No signal abnormalities.  No enhancing lesions, pansinusitis  (not sure if 3mm slices used - it wasn't ordered MS protocol.  I plan to ask neuro at next appt.)

Aug (Cervical & thoracic mri ww/o contrast) (I asked for MS protocal the technique on one says multiplanar multiecho sequences, the thoracic says Sagittal pre/post T1, T2, FLAIR, & inverse recovery.  Axial T2.

Cervical findings:  mild reversal of cervical lordosis, small hemangioma C5 /T1, no abnormal signal w/o cord, Small disc bulges (basically C4 through CD7 w/ minimal effacement of ventral CSF.  Bilateral perineual cysts C4-5 and C5-6.  Unremarkable study.  Note of sinus issues (duh...).

Thoracic findings:  normal, no "persistent signal abnormality is identified w/in the cord.  Significant CSF pulsation artifact demonstrated.  (how can they get a good read if the csf was making the imaging difficult?  I knew I should have asked for closed bore...)

I am just frustrated.  Dizziness persists as do all other symptoms (extreme fatigue, etc...).  All blood tests normal (awaiting 2nd Lyme), had 3rd of 6 planned B12 injections - no real improvement, if anything I now have more muscle stiffness and just finger pain (occassional but when it is bad I am not even moving).

I know I sound like I'm all over the place and all within a few months.  I am open to anything but worry that I am just asked to wait.  I am beginning to teach next week and I can't stand w/o being dizzy.  I cannot use my hands for long periods of time.  I teach high school history. I have gone in the past two weeks 4 times for 3-4 hours each and when I do I need to choose between cooking and/or resting as I cannot do both.  Then, basically sit with my three year old exhausted (and feeling guilty) that I have noooo energy at all.  I am on my feet from 7:30 until 2pm with about a half hour off.  I can't even stand for an hour now.  The past few years I have had debilitating pain from sinuses (hence the recent surgery) so some parents complained last year even though my illness was legit.  I am concerned and need to keep my dizzies and such under wrap.  This may not be MS, but what questions should I ask at my next appts?  I will go back to neuro just one more time, but if this persists I will find another doc.  My PCP is good.  But I don't know how I will make it through.

Sorry this is so long.  I am just wanting to be "normal".  I just don't want to be "that" girl again who is sick.  Meds:  Gabapentin (900mg at night) started in early June b/c of headaches.  Nuvigil, Cymbalta (saw therapist last year b/c of chronic illness), Advair, ZyfloCR, Sporanox (fungal sinusitis) Vitamin D3, Calcium w/D.

Thanks for your patience and consideration!

[vamanos]

Hi there,
I teach too, and I was terrified to go back to work. This is my first week back, and it is amazing how we can push ourselves when we have to.

Might I ask what parents complained about?

I have a positive MRI (two lesions in the right periventricular area) and many common MS symptoms. My nuero suspected MS and ordered a CSF which was negative.

I see him Tuesday to see what the plan is--whether he still suspects MS.

I also have bad finger pain. It feels as though my right index finger is tightening. I cannot explain it.

Have you seen a ENT? Maybe you have some ear issues going on?

You could push for a spinal tap--that could give you more information, however, you would probably need to take a couple of days off of work to do that. You could also repeat the MRI.

I am so sorry--I understand how daunting the idea of teaching all day is when you are sick.

Kara

[sued1974]

I am glad your first week back went okay!  Hopefully your neuro will be able to shed some light on what is happening with you.  

You are right we can push through.  That is what I am afraid of to be honest.  Having dealt with major sinus issues for 14+ years, I have pushed for so long to the detriment of my health.  Now I am somewhat "stable" (if you call inflammation in sinuses 6 monts post op) and these odd collection of symptoms occur during vacation when I am relaxed and wanting to just enjoy the time off! Just bizarre!  

Anyways, I have a history of pushing myself too hard and the past few years I haven't been able to physically.  

I see a really wonderful ENT who I saw in early July for a regular checkup and then the audiologist there did the test (VNG) for vertigo.  That is how I initially went back to the neuro.  My tests showed evidence of both peripheral and central vertigo.  

I've done research on peripheral causes and many do not seem likely now (especially since the "spinning" has stopped) but I still have other balance problems.  I can easily rule out BPV, Labyrinthitis normally goes away in a few weeks, and I don't have the symptoms of Meniere's.  

But, I don't doubt that I could have many things going on with my body at once, so I'll never discount anything....

I am on the fence about pushing for another MRI right now without having gone through with clear evidence of another negative Lyme test and B12 injections for a couple more weeks.  Then at least if I still have symptoms I can perhaps look for a neuro who better fits what I need - someone who will explore possibilities.  

I was thinking perhaps evoked potentials, etc...  I just don't know.  I just want to be sure I am asking the right questions.  I feel like I have learned so much from many of the messages and info articles on this board along with other websites.  

And as far as parents - they had heard rumors about me that falsely connected my sinus issues to an "abuse" problem.  It was really saddening to me as I am the type of person who doesn't take off days to shop or just because.  When I am out, it is legit.  And even then I am writing lesson plans that are pages in length... I don't need to defend myself, but it was disheartening and hurtful.  Thank goodness for good support where I work.

But I am weary of having a year where I am having a hard time getting out of bed.  That is why last year I had the sleep study.  I was sleeping through alarms after 8-11 hours of sleep at night (not including naps).  

It has been a long run.   I need to be patient.  But I also need to be proactive and figure out what is going on so I can be healthy for my family and my job.  

Thanks for your response!  I hope that you are able to get some information next week and that your school year goes smoothly as possible.  Please keep me posted!!  

[fortywhat2]

Hi,
I worked in the medical field for years and we had a patient who had unexplained migraines... all tests came back normal, including Lyme.  During a severe migraine episode a spinal tap (lumbar puncture) was done and the fluid tested positive for Lyme disease.  If you haven't had a spinal tap done you might want to consider.
Debbie
~Live as if all your dreams came true~

[sued1974]

Thank you, that is definitely an idea.  I guess if they were to do it the fluid can be tested for several things.  I will speak to my doctors.  Thanks!

[ncgirl04]

If you haven't had the spinal MRI I would push for that before the spinal tap. Alot less painful :o) I had the brain MRI in 2008 because of double vision and was told I did not have MS. It went away and now in 2012 after 6 months of numbness in my body I went for the brain and the spinal MRI with the dyes and was positively diagnosed with MS. Not sure if it is a good thing or a bad thing as I may have not finished college if I had found out in 2008. Best to get a positive diagnosis so you can begin treatment which may slow down its progression. Good Luck...

[sued1974]

Thanks, I've had a cervical and thoracic spine MRI.  I am worried though that the thoracic spine clarity wasn't good (b/c of CSF pulsation).  And also it is a hard area to image apparently.  

I am thinking of perhaps waiting another month or so and seeing how the Lyme tests come out and also how the symptoms progress.  

I also wonder if any of the benign cysts and tumors may have obstructed the view of my csf on the cervical spine.  To have minor disc bulges on several levels, some cysts and tumors and the metion of my sinuses (from spinal mri) makes me definitely want to have the neuro look at them again.  
I'm sure it is fine, but it would make me feel better.

Last question for anyone - I hear that most lesions occur in the cervical spine.  The only part I didn't get imaged was my lumbar spine (oddly enough since I have so many symptoms more on my left legs/feet/toes thand to a lesser extent on my right.  

From reading some of Quix's articles I understand that where the lesions do not really measure up to the symptoms.  I wonder if is worth getting it imaged.  Probably so even if only to see if their are bulges, etc...  Apparently, that area may be the easiest to image.  But again... just getting my info from the internet and we all know how accurate that can be :) lol

[vamanos]

Hi there,
What did you read about the symptoms and spine? Which health page are you referencing? I am curious too, as my nuero suspects lesions on my cervical spine.

[Ricobord]

Because your descriptions sound so much like Lyme Disease, I wanted to let you know that a negative antibody test does not exclude it. Your headache, fever, chills are consistent with the onset, and all your symptoms since then are also consistent with the symptoms of Lyme.It is amazing how much it can mimic other diseases, and neuroborreliosis symptoms can be very similar to MS symptoms.

The scary part is how many people test false negative for Lyme.  I tested false negative in both my blood and spinal fluid. Multiple doctors told me I did not have it after the spinal fluid test was negative. They said it is a "highly accurate test." Well, I have since learned it is highly accurate when it's positive.  Doctors who treat a lot of Lyme say more than half their Lyme patients who had LPs test negative for antibodies in the spinal fluid because Lyme just doesn't like to live in the spinal fluid. It prefers tissues and nerves.

I had developed non-MS symptoms, so I became convinced I didn't have MS, even as I was referred to a university hospital MS expert. I asked my PCP to order testing at IgeneX. They are a specialty lab that does more sophisticated testing for tick borne diseases.  I tested positive there, along with a coinfection called Bartonella that makes the neuro & GI symptoms of Lyme worse. I started treatment by an LLMD, a Lyme Literate Medical Doctor who is a member of ILADS and I am much better now.

I know that feeling of death after what seems like minimal effort. I remember when a friend asked if I could "just push through it" to take care of my 5 year old and I realized I couldn't.  I ended up hospitalized shortly after that.  If you do have Lyme, you need to find out soon.  And don't take any steroids unless you are first convinced you do not have it. (Steroids are what made me so much sicker.)

Since you like to do research, this might be helpful.
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

There is a documentary called "Under Our Skin" that features a woman with neuroborreliosis who went undiagnosed for 10 years (she got much better with treatment.) It could be useful to see if any of what's portrayed in the film is familiar to you.

You can also Google "Tom Grier Lyme testing" to read a scientist's explanation of why Lyme antibody tests are so flawed, and why many Lyme patients test false "negative" by the CDC surveillance criteria.

Keep going with the MS work up, though.  Like I said, they can look a lot alike and you want to get the diagnosis right.

Lyme is controversial and there is a lot of conflicting information out there.  You are welcome to copy your post to the Lyme forum to see what others think as well.

[vamanos]

Ricobord,
Very informative post. I had a fasle positive for Lyme, followed by a more extensive test, which was negative. I am wondering out loud if there is any significance to a false positive Lyme test.

[sued1974]

Thanks for the info!  If anyone is concerned about Lyme or just interested the Under Our Skin documentary is both fascinating and horrifying.  Some things to think about definitely!  I will be posting to the Lyme board! Thanks again!

[sued1974]

Here is the link where I found the info:
http://www.medhelp.org/tags/health_page/7687/Multiple-Sclerosis/Spinal-Cord-Lesions?hp_id=764

[Ricobord]

Sorry about the delay in responding..I just saw your question about false positives on Lyme tests.  I am often mystified when patients are told they have a false positive Lyme test.  Why would a doctor even run a test, if s/he intends to ignore a positive result??

Lyme tests are complicated, and the CDC surveillance criteria, which was not originally designed to be a diagnostic absolute, somehow evolved into that.  They recommend a two tier testing protocol, a screening test followed by a Western Blot, only if the screen is positive.  It is controversial. A whole lotta Lyme patients suffer needlessly because they test false "negative," including me.

In a nutshell, yes, it is possible to get a false positive. On the screening tests, certain viruses can trigger a positive. On the Western Blot, a false positive is possible on the IgG portion as the CDC looks for 5+ bands out of 10. But 5 of those 10 are not Lyme specific "bands", which are responses to antibodies in your blood. The problem is, they don't tell you which, if any of your 5 bands are Lyme specific.

The CDC interpretation also says to ignore the IgM portion if symptoms have been present more than a month. The assumption is that everyone's immune system will behave as expected and convert from IgM to IgG antibodies within 2-4 weeks of infection.  

There are some possible cross reactions on the IgM, too.  But to dismiss the IgM after 4 weeks just doesn't make sense. Not everybody's immune system got the memo on how to behave. I only showed Lyme specific bands on the IgM portion after 6 years of infection. My body was still treating it as a current infection, not an "old" one. I had been given steroids a few months before, and I am sure that affected my test results.

Doctors who treat a lot of Lyme disease say that false positives are very rare indeed as you'd have to have the precise combination of viruses and other bacteria to get just the right 5 cross reacting bands.

More common is a positive test for someone who was exposed to Lyme in the past but only had a short, mild disease. It is believed that there are some rare strains of the bacteria that human immune systems can conquer. There are also asymptomatic people who have the bacteria in their body, but their immune system is holding it in check. But when something stressful comes along, like a death, divorce, surgery, job loss, etc., they develop a full blown case of Lyme rather quickly.

The Infectious Disease Society of America says people without Lyme symptoms who test positive should be considered false positive.  But the Int'l Association of Lyme and Associated Diseases Society

[Ricobord]

Oops.... Looks like my pinky hit the 'return' key.  Downside of an iPad! ;)

But the ILADS doctors say they have seen way too many patients present with significant Lyme symptoms who were bit by a tick years before (like me).  They often recommend treating a positive result as it is easier to treat while the immune system has it under control. (Believing that a dormant infection is more common than a self-cured past infection.) Of course, tests are only ordered when the disease is suspected, so it is unlikely a perfectly healthy person would have a Lyme test run.

So, in a nutshell, I cannot comprehend how a Western Blot that shows any Lyme specific antibodies (nothing cross reacts with them), can be seen as anything but a positive sign of Borrelia in that person's body.

You can google "Tom Grier Lyme" or "Tom Grier Lyme testing" to find his articles on Lyme testing. He is a microbiologist (and Lyme + coinfections sufferer for about 13 years). He explains the testing, how you can have Lyme and still test "negative", and why false positives are so rare.

I am curious...did you have a Western Blot?  If so, which bands were positive? (You can PM me if you'd like.)

I hope all this makes sense! It is my bedtime. :O