Non typical case?

[PastorDan]

Sounds like I'm in good company, being in "limboland", as I just read someone else describe it.  I've searched health sites for several weeks, and MS keeps coming up as the most likely issue that would explain my symptoms.  I don't want to have it, obviously, but I am getting really tired of having these symptoms for months with no explanation.

My primary symptom has been dizziness, originally a vertigo feeling with the room spinning, but lately more a sense that the floor has just dropped out from beneath me.  As you might imagine, a fair amount of queasiness goes along with these sensations.  I also have a kind of bright spot or cloud in my visual field, always to the upper right, similar to the floating spots one sees after having been the subject of a flash photograph.  Those two symptoms are nearly 24/7 now.  There have also been several headache episodes, but they are not consistent with one another in either location or sensation.  Notably, though, I could honestly say that headaches were very rare for me before October.  I may have had one or two comparatively mild headaches in the 15 years since I had one summer with several migraine attacks.

All of this has been steady for three months, but I had an episode of similar dizziness three months before that, which I believed at that time was due to sinus pressure.  Sinuses are clear now, though, and I have the CT scans to prove it.  I have 3 CT scans, carotid ultrasounds, EKGs, both an ENG and a VNG, a BAEP test, and blood work that all say normal.  Oh, a thorough ophthalmological exam also found nothing, but confirmed that my current glasses are well-prescribed.

I had an MRI 8 days ago that says "abnormal," but the neuro doc (whom I met the day before the MRI) said it's nothing to be concerned about, that four "punctate-to-small T2 hyperintensities in the deep and subcortical white matter" are perfectly normal for a man in his early 50s, and so is the collection of CSF (2.4 cm dia.) behind the cerebellum.  He has me undergoing vestibular rehabilitation therapy.  Oh, the MRI report also points out that the whole vestibular cochlear canal business is free of any kind of mass or tumor.

I am wondering if I should look for a different neurologist.  Any thoughts, anyone?  If I want a second opinion, can anyone suggest how to go about finding a good one?

[PastorDan]

Tuesday's BIG flare-up of nearly all my symptoms subsided soon after I began the migraine drug, but since the dizziness and visual stuff are still as bad as they've been for weeks and months excluding Tuesday, it obviously didn't solve the whole problem, at least not yet.  Called my PCP's office Monday and Tuesday, asking to discuss a possible second opinion referral.  Sent a fax over there today, relating a lot of the recent history with the neuro guy.  Called the PA a few hours later, and she said he has all that, but he's waiting to hear what the neuro guy has to say first.   AAAAAAAAAAAAARRRRRRRGGGGGHHHHHH!!!!!!  His indifference (the neurologist's) is a big part of my problem; how long will the PCP doc wait for him to return a call about an impatient patient?

[/whining]

[PastorDan]

Very, very bad day today, but the neurologist finally called back, and we talked about several things.  Today's extraordinary visual episode, I had to agree, seemed very consistent with migraine (which I have experienced before, though not for over a decade).  Because of that, we're trying Depakote.  He mentioned a different migraine drug (sorry; forgot the name) that he would prefer except for my history of kidney stones.  Turns out this guy hasn't read half my lab reports yet.  Keeping my fingers crossed.

[flowerfloosey]

Great advice about not telling them you are researching. In the first place it puts them on the defense..and they need to feel like they are in charge of diagnosing. They immediately think you are WANTING MS! Ugh! I have a hard time wishing they would just talk to me like I was in their inner circle and tell me what they are thinking. I have found one such neurologist and she is so great to talk to. Of course she gave me a dx adn then sent me to a teaching hospital and they told me it was doubtful I had ms. Such a confusing world we live in!
Thanks Lulu for your comments
Cynde

[Lulu54]

PD,
The one thing no one has mentioned to you yet is - DON'T TELL THEM you have been researching MS online.  There's nothing that will get you a non-dx quicker than if they think you have done so much studying you have acuired the symptoms through reading and researching them.  

My neuro knows I have researched quite a bit, but hasn't a clue as to how much I really know.  Maybe I'll let him in on  it the next time I'm there.  He doesn't appear to be the type to be threatened  by a knowledgeable patient.  

mum's the word,
Lulu

[PastorDan]

Just to update: Many friends & family have pointed me toward the very same center where Lu's doc is.  Also, I am amazed at how many have so many of my symptoms.  I don't think I even mentioned the tremors here, but I read someone today on here saying that they looked like they were shaking their head "no" all the time.  Well, welcome to my world.  Trouble with the hands, too.  Then I learn a coworker's sister has that as her primary symptom -- and that she was diagnosed through the same center within a week of her first visit.

I don't know how many times a person can say thanks, but you folks have been great, and I have a feeling I'll be saying it a lot more in days to come.  God bless every one of you.

[buriedinfur]

The feild test is different from the VEP - for the VEP they put little wires on your head with sticky stuff and you watch a grid that flashes from black to white.

Hang in there and good luck with your journey. It's frusterating. Not that we want MS...we just want some sort of answer, eh?

Mine appear for now to be a bunch of combinations of things - mostly due to the fibro - but I now have a great dr that wants to watch me for now because while it may 'just' be that - something that they've not found may be hidden by the fibro.

Having a good dr on your side is the most important thing.

[jensequitur]

Dan, welcome to the forum!

One of my first symptoms was dizziness.  I would get dizzy every day, at 3:30 pm.  Just about on the dot - I could tell what time it was by my spinning noggin.  Then my face started tingling and buzzing, and I began to think maybe I should see the doctor.  I was diagnosed in March 2007 with RRMS.  My dizziness took about eight months to go away.  When I'm having a flare, it comes back - so it's certainly possible to keep having the same symptoms.

Quix has given you some great advice.  You can actually tell whether the images are high resolution by comparing them with images online, and with some on this forum.  My space has some .7 Tesla images - pretty low-resolution.  SunnyToday has a 3T MRI picture posted, so check hers out to see what that looks like.

[doni54]

Hi Pastor Dan, and welcome to the forum. I'm sorry you are joining all us limbolanders, but really glad you found us.

I too am undx, and know how tough it is to get a dx.  I pray that yours will come soon.

Everyone has given you great advice and info, I just wanted to let you know how glad I am that you are here.

I look forward to getting to know you better and hope you will post often.

Take care,
doni

[Katesnon]

I, too, was told I had an inconclusive MRI.  White matter scattered and Dr. said it is just "Brain Dust"!  What?  He said older people sometimes get it or it night be something else.  I'm not old.  57.  I have gone for 3 MRIs to cover entire spine.  Expensive.  I have had 3 EMGs also expensive.  Dr knows something is wrong, I just need som kind of answer.  
I keep going to him because I just don't have the strengh to find another and go through the whole mess again.  I have had symptoms since 1992.  My eyes, seeing double and my lids drooping, one side of my face.  Dr. said it was because I have hyperthyroid. I have had symptoms come and go and now, my spine is effected.  Still no answers.  his is the 3rd Dr. i also have brachial plexus atrophy, again who knows why!!!
Look for new DR.  Don't have to be rude, but be assertive and tell him/her you need some kind of answer.  I know "brain dust" is not the answer I wanted.  Good luck Dan
CATHY

[PastorDan]

Thank you all so much.  Quix, I read your journey to diagnosis on your profile, and printed it (in larger type) for my wife to read.  She no longer thinks I'm nuts, as the first page sounded to her as though someone was writing my saga.

The ophthalmological exam I had included a field of view test, in which I looked into a white dome-shaped cavity and signaled the tech (I think I pushed a button; not sure now) each time I saw a flash of light anywhere on the white surface.  Normal.

Gotta run to church.  Peace, blessings, & many thanks to all.

[Quixotic1]

Hi, I'd like to weigh in here.  First welcome to the forum and to our little Light Side of the Moon.  You bring up a couple "age old" problems here.

First, the combination of vertigo, visual problems, and headaches is not necessarily a strong picture of MS.  It could just as easily be a complex type of migraine.  But, we answer questions here in the context of MS.  And yes, all of those symptoms can certainly and commonly be seen in MS.

The first is whether people in their 50s normally have small hyperintensities on their brain MRIs.  The answer is yes, commonly.  However, such lesions are silent and do not cause symptoms.  But, you have symptoms.  Since you are of my generation you'll likely remember the movie.  It is a true Catch-22.

What the good neurologist will ask when they view an MRI with such T2 lesions is, "Why was this MRI requested?"  The answer is, "Because the person has neurological symptoms and I wanted to see if there were any lesions."  So, there ARE lesions and the immediate response is to dismiss those lesions as normal.  Huh?

Could the lesions on your MRI be just normally acquired ones due to your age?  Yes, of course, but we have to also remember that not all people of your age have such lesions and such age-related lesions do not cause symptoms.  Then we have to consider that the lesions "may" be related to the neurological symptoms.  The smart, good neurologist will not dismiss them, but consider them suspicious and be driven to investigate more.  Those lesions must be kept in mind.

I liken this to the store owner who comes in one morning to find his store trashed and valuable merchandise gone.  He calls the police who send out investigators.  They verify what the owner claims.  So the detective says, "Go see if there is any evidence of forced entry."  The police find that one of the windows is newly damaged and gouged, and that it can be jiggled open even when locked.  There are new scuff marks on the window sill.  So the detective says, "Oh, that.  A lot of these old stores have problems with their windows."  He turns to the owner and says, "There is no evidence that you have been robbed."  And he leaves.   Huh?

There are a couple things you can find out about your MRI as suggested by the others.  First what the stregnth of the machine is.  It will be reported as a number followed by a T.  The T stands for Tesla, the unit of the magnet strength.  The second is whether the MRI was done using the needed Protocol for MS.

Now, you have had a very good work up to date for the vertigo. The testing you had did not show that there is a cause in the inner ear for your vertigo.  This implies that the cause is central within the 8th cranial nerve or in the brainstem, which would be consistent with MS.  It doesn't prove a central cause, but suggests it.

Vestibular Rehab can be very helpful no matter what the cause of the vertigo.

Since you have definite visual symptoms I would wonder why they haven't done a formal visual fields test or a VEP (Visual Evoked Response).  Both of those might yield some more information about your problem.  When the ophthalmologist looks at your optic nerve one of the things he would have been looking for is signs of optic neuritis.  The optic disc would be pale and thinned.  But, optic neuritis does not show on the physical exam in more than 50% of cases.  That is why the other tests would/could be helpful.

The neurologist seems to be under the very odd impression that each attack of MS must be different from the ones before it.  This is just not true.  Any series of given attacks may appear exactly like others, may have some similarities, or may be completely different.  So, he seems undereducated on that point also.

I hope he didn't make any remark that you are too old.  Though it is less usual, MS can and has been diagnosed into the 80's and seen to have it's first symptoms well into the 70's.  There is no reason to beleive that there is some magical upper limit.  My first symptoms were at 52 and my diagnosis at 54.

As for whether this is one attack (in the context of MS) or a series of attacks here is one set of definitions.   If you haven't had a month where the symptoms were either improved or stable, then this is all one attack (if this is MS).

http://www.medhelp.org/health_pages/Multiple%20Sclerosis/Relapses--Pseudo-Relapses-and-Remissions/show/372?cid=36

So, I agree that a second opinion is definitely in order.  Along with that the other tests I mentioned might also be helpful.

Hope you stick around as you go through this.  We'll provide all the support and info we can.

Quix

[PastorDan]

Many thanks again.  I saw the vestibular link; thank you for that.  I will spend as much time as I can get away with at the start of the work week looking for another opinion, and I know of at least one major teaching hospital a couple of counties away.  I am certainly thankful to have found a group of such helpful people!

[Lulu54]

be sure to see this post and the link there for vestibular questions....

http://www.medhelp.org/posts/show/748234

[rendean]

Hi, I'm new to the forum but old hat at the symptms and limboland. I have been blessed with a local neuro whose ego does NOT get in the way of finding me a definitive diagnosis! He has referred me multiple times with the second neuro consult at Emory in Atlanta  this week. Previously he sent me to the Dizziness and Balance Center at Emory for my vertigo. Long story short.. after some testing with negative results. The experts decided the vertigo was migraines even though I didn't necessarily have the headache to go with it. They informed me that the vertigo could be/ probaly is my aura and the aura can be present before or after the head pain  or exist without the head pain. I know this is not the definitive answer but it is from an academic center performing testing and diagnostics at a higher level. BTW, they looked at my MRI results done on a
1.5T and decided the shape of the lesions did not correlate with MS (go figure) Anyway, this is what the supposed brightest and best minds have deduced . The white spots on my MRI were due to  hypertension, migraines,etc.

As for a 2nd opinion, are there any academic centers near you? Teaching hopsitals are always welcoming "interesting" and 'unusual" cases as test subjects for their medical students. This does not sound as bad as it is. My son has several serioous health issues and has had them since an early age. The residents at an academic center actually diagonsesd part of of his problems.  The young , eager minds of medical students, who have just read aboout about all the weird  obscure variations are sometimes quite helpful.

I apologize for the typos. It's late and I'm exhausted but wanted to post my thoughts. I wish you well and good luck in this journey thorough Limbo land

[PastorDan]

Thank you, Lulu.

I have no idea what strength the machine might have been, but I do have a CD with all 154 images on it.  I also have a fax copy of the radiologist's report.  The self-loading viewer on the CD won't work on either of my home computers (one's Vista, the other's ancient), but I was able to view it on the computer I use at my day job.  Of course, I had little but what I've read online to tell me what I was seeing.  The test was performed at a center that only does MRIs.  Very nice, but since I'm in a small town, quite a hike.

I took my wife with me to the neurologist's.  Between she and I discussing the conversation we had with him, we think the reason he discounted the possibility of MS was that I've had the one group of symptoms since this trial began.  His opinion seemed to be that I would have had completely different symptoms each time.  Personally, I'm looking at these last three months as one continuous event.  There have been hours I've been symptom free, but I don't think that there have been days.

Thank you again for your help.

[Lulu54]

Also, don't overlook reading our health pages - yellow icon in the upper right hand corner - they contain a lot of information about searching for a diagnosis that will be helpful to understand.

[Lulu54]

PastorDan,
Oh boy have you ever asked a question that will probably set off a storm of hallelujiahs and pass the neuro choruses.  If the neurologist is saying because you are 50, MS shouldn't be consider, he is absolutely wrong.  I was just dxd this year at the age of 54.

At 50 I wouldn't say that hyperintensities in the brain should be considered normal.  

The brain MRI was done on what Tesla strength machine?  It would be 1.5T or 3T probably- if it was done on anything less it would be pretty much useless.

Do you have a copy of your MRI film/cd and the radiologist's report?  You definitely want those - just call the imaging place that did it and make your request.

Whatever the cause of the vertigo. that has to be making you miserable.  I hope it is resolved soon.  Because it came and went, and then has come again, concerns me.  But I must remind you that we are not doctors here, so these  are just all educated guesses.

Well I trust others in our congregation will be along to help you with this as well.

Welcome again!
Lulu