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1135896 tn?1278441715

Thoughts on diagnosis or lack of one

I can't believe I'm doing this... :)

I don't think that I can adequately describe the last year's worth of diagnoses or lack thereof.  I know I can't describe all the symptoms.  Pardon the length of this, but I'd love some thoughts.

I am a 42-year old male; attorney; former GC of a publicly-traded medical device company.  On January 28, 2009, I was struck by a very sudden head pain behind my left eye that caused residual tingling and soreness.  When that continued, I went to the emergency room for help, and left with a "probably migraines" diagnosis and some vicodin.  

What has followed has been 11 months of difficulty that I could never have imagined; save reading some of the posts here that are much worse than my situation.  My feet became very sore, and suddenly in March my thumb began burning very badly, which spread to the rest of my hands (which become very mottled now).  

Early MRI's showed one noticeable lesion, but I was originally diagnosed with a TIA (I don't smoke or do drugs, and I drink moderately).  I went to USC Medical and got what I think should have been the turning moment in this whole ordeal:  a diagnosis of INO.  My eyes had become so bad (which always lacked fusion), I stopped driving.  

So it continued...headaches, tremendous fatigue, brain fog, burning hands, painful (and sometimes enormously cold) feet, dizziness, and both of my knees buckle to the point that I fall down once a day.  I should note that I have had psorasis most of my adult life, and though the flare ups are fewer these days, it does cover most of my body.  And then my doctor suggested it might be all in my head.  And I got mad.  Then I went to the Mayo Clinic.  

After the really wonderful opening question of "Why are you here?" they found autonomic dysfunction (which explains a lot), but disagreed on the INO and called it Duane's Syndrome.  They also found sleep apnea, which has provided me with a mask that I'm contemplating putting up on eBay.  :)

So today, December 11, I have doctors that disagree on INO (which I'm told by multiple doctors essentially equals MS), agree on autonomic dysfunction and sleep apnea, and have found one definitive lesion that could have been caused by a TIA (but why is it still there?), vasculitis (but can't be found anywhere else), or a demylenizing disease.  

I'm walking with a cane to prevent falls and help with my dizziness.  I don't drive.  My life is upside down, but I look perfectly normal.  Like many of the stories I've read here.  

Would anybody care to share their thoughts?  
9 Responses
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147426 tn?1317265632
darn
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147426 tn?1317265632
EMG/NVS to rule out peripheral neuropathy.  Not only can I not type, I can't edit.  

forry again.
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147426 tn?1317265632
edit - What happens in INO is that the two eyes don't move together in all directions like they should.  When the normal eye moves laterally (looking away from the nose) the eye with the problem CAN'T move inward to follow the gaze.  The affected eye just looks forward.  The normal eye often has jerking back-and-forth movements as it looks away.

sorry
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147426 tn?1317265632
Hey, Dave, Welcome.  I read your post last night and had so much to say and not a brain in my body (anywhere) that allowed me to put two cogent thoughts together.  Are you a fellow USC alum?  I went there for med school.  I'm really glad you posted.  No one says you need to remain active, though we love it when we get more males here to help balance the estrogen.  But, lurk if you need.

So you liked the "lies..." thread, eh?  It was fun to finally bring all the sh!t we have been told together and poke righteous fun at it.  You say you have some contradictions to it?  Please tell us.  I'll set anything straight that I need to.

Now, I have no idea whether you do or do not have MS, but I can talk about what you have told us in the context of MS.  It is not at all unheard of to see the onset of MS represented by the mother of all headaches, unlike what one has experienced before.  And yours seems to have been ocular in nature.  A migraine?  Possible.  Do you generally have migraines?  You're a little old for the usual onset.

During the acute attack they diagnosed INO - InterNuclear Ophthalmoplegia.  For everyone else this is a problem commonly seen seen in MS.  When it involves both eyes (BINO) it almost always means MS.  When it is seen just on one side in older patients, it can be MS or possibly a stroke.  The "nuclear" bit refers to the "transit hubs" of neural intercommunication between the three cranial nerves that coordinate eye movement, (CN III, IV, and VI) in the brainstem.

What happens in INO is that the two eyes don't move together in all directions like they should.  When the normal eye moves laterally (looking away from the nose) the eye with the problem can move inward to follow the gaze.  The affected eye just looks forward.  The normal eye often has jerking back-and-forth movements as it looks away.  Variations of this occur.  Very often this problem causes double vision when the person tries to look side by side.

What is young?  Generally in neurology this means less than 40, and old means over 40, but this is a wildly varying range.  Yes, kids, you guys over 40 are neurologically elderly.  Sorry.  In some studies older means over 60 and that makes more sense.

So, You were diagnosed with INO and a migraine.  Okay.

However, usdden onset of eye pain can also mean optic neuritis.  I don't believe that INO is painful condition.  One of our members, T-Lynn has BINO, but she hasn't been here in a while.  I'll try to contact her.  So, if the eye pain was not migraine we have to think of optic neuritis.  Dave, how were you tested for ON?  Did they look in your eyes and say you were fine?  Or did they do a Visual Evoked Response VEP and say it was normal?  If you have been reading much here you will know that a normal physical fundoswcopic exam does not rule out ON.  64% of people with confirmed ON have a normal fundoscopic exam (where they look inside your eye).  Did they test you for color desaturation?  (colors looking washed out)

You were right to run not walk from any doctor that suggests that this is all in your head.  Sheesh!  You should see our threads on THAT issue!  However, you chose to go to my least favorite place, the Mayo.  I always recommend that you "Hold the Mayo."  

Duane's syndrome??? This is possible given the lifelong problem you had with fused (conjugate) gaze.  I would like to see the results of your childhood testing to see if you now have a new problem with your gaze.  Duane's is characterized by an inability to move the eye OUTWARD (rather than inward, though that can happen in addition).  The SOMETHING sudden happened almost a year ago.   However, tight and complete medical thinking dictate that the Mayo needed to incorporate all of the data into a coherent diagnosis.  They did this with the diagnosis of autonomic disorder ( did they specifiy what parts of the autonomic system were malfunctioning?)  and sleep apnea.  All of those could explain what you are going through.

Now, the lesion on your brain was not a TIA.  Those don't leave lesions.  Do you have risk factors for stroke?  Hypertension, hypercoalgulable blood disorder (Antiphospholipin Syndrome, etc), hyperlipidemia, obesity?  

Now you have burning in your extremities.  In looking at the literature I found several that referred to peripheral neuropathy occuring in patients with psoriasis.  That could be an answer and you need an EMG/NVS studies to rule peripheral neuropathy in or out.

Regarding the sleep apnea:  Did they determine if it was Obstructive or Central?  

I see your dilemma.  In order to explain all that you have been through the doctors are proposing (it seems) that

You started with a TIA or Migraine or severe Eye Pain (as in ON) that caused the headache or pain.  Have you continued to get severe headaches?

An ophthalmologist diagnosed INO at USC (stroke or MS)

Mayo said no INO, but Duane's, but did not explain the exposive headache and eye pain.

Mayo added Dysautonomia (which can stand by its own or be a part of MS)

and Sleep Apnea (which can stand by its own or be a part of MS)

and we know you have an autoimmune disorder of psoriasis, which can cause peripheral neuropathy.

You walk with a cane.  Do you have actual leg weakness or is it due to the dizziness and unbalance or the pain in your feet?

You can see that it seems that I am prattling along in circles.  The reason is that I am always uncomfortable when someone gets a new diagnosis for each, individual symptom.  that tells me that either the person is EXTRAORDINARILY unlucky or we are missing the unifying factor.

I gues the things that could help determine some of this are:

An EMB/NVS to determine if your neuropathy is central or peripheral.

A VNG and perhaps posturography to see if your diizziness is central or peripheral.  I would recommend the House Clinic in So Cal - World reknowned in disease of the ear and fully capable of analyzing your dizziness.

Knowledge of whether your apnea is Obstructive or Central

A second opinion about the INO vs Duane's Syndrome

And Did you ever take an Anti-TNF med (like Humira, Enbrel, Remicade, etc) for your psoriasis?  those meds have been known to unleash MS.

Well, that is how I would start to approach this.  If you don't mind ferreting out my thousand questions I would appreciate it - or ignore me completely because I sound like a raving lunatic.  My fellow forum members will assure you that I only rave intermittently.

Welcome, again,

Quix
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152264 tn?1280354657
Hi Dave. I'm not diagnosed with anything (symptoms for 10 years--also starting at age 42). No one ever told me to my face that I had INO, but I found in one neurologist's report that she saw a "left INO"--however, it was "subtle" and "probably equivocal" (I think those were the words in the report).

Which I believe means that she wasn't sure whether she saw it or not.

I have not had any vision problems except that when I am very fatigued (sleep-deprived) OR when I read for more than a couple of minutes while looking down, I get vertical ghosting in both eyes (not true double vision) and a funny feeling in my left eye.

My symptoms overall are not anywhere near as severe as yours (and they are mostly different). I am sorry you can't drive and have so much trouble walking; that must stink. I can sure sympathize with the lack of answers and the conflicting reports from doctors.

Nancy
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1135896 tn?1278441715
Thank you so very much for your support and kindness.  Your thoughts and just understanding are remarkable.  I've read other of your posts that make me laugh or sad.  I wish there were a magic wand...

I have gotten blood tests and they come back routinely very normal (including Lyme).  I should note, importantly, that Mayo also found a Vitamin D deficiency, which makes little sense given my living in Southern California.  Also, I have had several LPs, which have been pretty rough because I have VERY low CSF pressure levels, but they have come back damaged or normal.  But Mayo did the bands, so I may go back and check that based on other discussions.

Kathy, thank you for the sleep ap tip.  I'm looking into it next.  

The Lies My Neurologist Told Me post kept me totally amazed.  If somebody had taken a picture of me while reading it and the comments thereto, I'm sure my jaw would have been open the entire time.  I may add a few I've heard that seem to conflict with everything I've read around here and elsewhere.  It is amazing.  As a lawyer, I can tell you with absolutely certainty that the kind of customer service and personal attention given to patients by neurologists would be cause for disbarment or at least certain poverty in the practice of law.  

One item my wife asked me to ask participants of the board.... Have many of you been diagnosed with INO?  I was tested at USC for ON, I think - it obviously came back negative.  I'm not really sure, actually.  A lot goes on that I don't understand or that I'm not really told about.  

I struggle to be active in forums/groups like this.  But I sure appreciate your help and I'm going to be an active lurker, at least.  Thank you so, so, so much.  

Dave
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405614 tn?1329144114
Welcome.

My first thought is total empathy.  My situation was different, but the same in that it is totally frustrating and life-altering.

At USC, did they do complete ophthalmalogical testing?  No sign of optic neuritis? You've had more than one MRI that shows a lesion in the same area?  From what I've read about a TIA, their symptoms come and go, not stick around for a long time, and they don't leave any visible lasting damage.

It's always wise to walk away from doctor's that suggest you're symptoms are caused by your imagination.

Duane's Syndrome is a rare genetic defect; ya gotta love it when they go for the obscure!  You've probably read the one about why look for zebras when you hear what sounds like horses approaching?

Was the sleep apnea diagnosed from a sleep study?  Did they have you try the CPAP there, and did it seem to help?  do you feel that you don't have it, or do you just despise the CPAP?  (My roommate gave hers away)

The cane is a good idea.  I was considering one for my dizziness, but managed to find relief through vestibular physical therapy.  You might consider trying it; not having that dizziness helps a great deal.  Mine comes back from time to time, but I do my exercises and it subsides.

Hmm, have you been tested for Lyme disease?  Did they test for a bunch of other stuff, too?

Sorry, my "thoughts" are a bit tangential, but give you some things to consider.

It took me 20 months to find a neurologist that would diagnose my MS, and I have a brain full of lesions.  Now I'm trying to wrap my head around having a diagnosis and giving myself shots, accepting that there is actually a reason for my fatigue and brain fog, among other symptoms.

Stick with us, kid (you're 5 years younger than me), and we'll help you find your way to the right doctor, ask the right questions, and find some answers that you can live with.

Take care of yourself,

Kathy
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Avatar universal
Hi,  I am really sorry to hear your story.  I was dxed with MS in Dec. of 07, and found out a year ago that I also have an underlying Lyme disease infection.

Please consider having a western blot (lab test) run to see if any Lyme antibodies show up.  Foot pain is also very common in one of a few coinfections that sometimes come along with Lyme disease.  Not saying this is your issue, but it is what popped into my head when I read your post.

God bless you.
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867582 tn?1311627397
I can totally empathize with you.  In the five years that I have been trying to get an answer, I, too, have travelled to USC as well as to Mayo, with essentially nothing to show for it.  Meanwhile, we're out a lot of money,  our lives are seriously impacted though we may look normal with symptoms getting worse and new symptoms popping up daily with people suggesting it is "all in our heads".  Limboland is truly a living hell!!  

I'm beginning to wonder if we could do better by being evaluated out of this country.  It might be worth a try.  

Like you, I have sleep apnea and I can suggest trying the mask that works for me:  ResMed's Mirage Liberty (large size).  It's the greatest!  Also get the sleep apnea pillow (Praxair carries it) and get a CPAP with a smart card and the ability to adjust the pressure to your changing needs.

Hope things get better for you - you have lots of company in Limboland!!  We know what you're going through!  Been there!!!

WAF
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