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3 months of mystery and still no certainty
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3 months of mystery and still no certainty

Hello all,

I posted a cpl weeks back with some questions regarding these strange series of symptoms that came on suddenly.  I have seen quite a few doctors since then, so I thought I'd post a new thread with what I have learned (or not learned in many instances).

Here is the basic story.  I'd appreciate anything you can offer because I think my doctors are attributing almost ALL of these things to stress, and I just don't buy it - maybe some - but not all of it...

I should note first: I am male, 32 in OH.  I exercise regularly, eat right for the most part, do yoga, running, weight training.  I do not smoke or do drugs and I rarely drink except the occasional tasty IPA beer or a nice glass of vino.  :)  I have never been on any meds except for when I get seasonal allergies in May each spring.  (I just got the shot in the rear end yesterday actually, so hopefully no sniffles this year!)

Anyway, back to the point...

summer 2009:
really brief bouts of a vertigo type sensation.  I'd be sitting in my chair and feel as though I was tipping over.  These only lasted about 1-2 seconds and only occured maybe once or twice a day, intermittently over a month or so.  Then it seemed to stop.

Winter 2009:
I got swine flu and had a couple sinus and upper-respiratory infections, one of which went away and then seemed to come back for a second bout.  I recovered fully.

FEB, 2010:
The vertigo sensations returned, but this time it quickly became a constant unsteady feeling, almost as though I was constantly a little off balance.  I can not really describe this as a dizziness per se, but more of a constant uneasiness or unsteady feeling that things were just "not right."  This eventually turned into feeling like I was disconnected and foggy, in a dream like or surreal state where I sometimes found it hard to concentrate. Another way of describing it would be like looking through someone esle's prescription glasses or being on a drug that makes you feel a type of "high" but not in a good way.

MAR, 2010:
Go to see Prim Care Phys.  He finds a middle ear infection and gives me cephalexin.  Tells me could be also inner ear issues from all of these colds and viruses I caught.  2 days later, I start getting stressed and feeling weirdness in my limbs (not numbness or tingles, but just some strange sensations, almost approaching a weakness and tingling, but technically never losing any abilities).  My hands would go numb at night while sleeping, particularly the ring and pinky fingers. It seems to happen when I lay on my arm or have my elbow bent (and I do realize this is consistent with cubital tunnel syndrome, similar to carpal tunnel syndrome).  A sudden onset of floaters appeared in my eyes (dark and light).  No pain or anything however, just lots of new floaters...

Back to my Dr two days later.  He orders blood tests and MRI of brain w/o contrast.  I go and get all these done and everything turns out normal except for pan sinus disease which appears chronic.  Back to Dr after that again and he starts saying this is anxiety and that I need to chill out.  I told him I was worried about MS, but he said did not see MS in me at this point.  He did strength and visual tests and a few basic balance tests which I did with no problem.  I was given Xanax.

2 days later I can not sleep at night and go straight to emergency room for debilatating anxiety and feelings of uneasiness and strange sensations all over.  I feel like my whole body is doing strange things - I notice small muscle twitches on my right tricep, occasionally on a thigh, eyelid, or various other places, and a very faint buzzing in my right foot (would come and go).  At the ER, they did one more round of blood tests. ER doc says I am fine, gives me morphine, tells me it is anxiety and gives me a stronger med to kill off the chronic sinus disease which she feels is cuasing all of this.

In addition to the floaters, I now see that my pupils are of unequal sizes through out the day, especially when I first wake up in low light levels.  I had a hard time seeing the difference in bright light or outside, however when in a dark room the left pupil appears about 10-15% larger than the right.  They both seem to dilate and refract OK however. Sometimes the level out for the most part, but there are times when they are different sizes.  I make an appt with a neuro-opthomalogist.  He checks my eyes and says although lots of floaters can indicate a tendency toward retinal detachment, he sees no issues with my eyes.  He checked pressures, field vision, and everything else - great doc by the way - and said he'd see me again in 7 weeks.  He did not say much about the pupil.  I was unable to reproduce it in his office (of course it goes that way, right?)  :)

APRIL 2010:
I begin to occasionally hear a small rumbling in my left ear at night while laying bed.  My wife was lightly snoring (she gets allergies in the spring which causes this), but I only heard the rumbling when she would snore, even over background noise like the TV rambling in the background.  I guess this is a type of myclonus (which is an involuntary muscle twitch), but I read these are common in MS patients, so there is one more strike.

I also notice an ever so slight tremor in my left hand when holding it in certain positions, mainly while typing and the wrist is resting while lifting my index and middle finger (this is happening actually right now as I write this), or sometimes pointing to something on a paper.  It is annoying but not out of control (no wide tremor), just a fine movement.  These come and go and are not as instense as this all the time.

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(sorry it was too long, so I continue here.....)


Since my unsteady, surreal feeling is still there and slightly more intense, my Dr orders two more tests.  1) a tilt table test (which came back fine - no blood pressure issues at all), and 2) an ENG test.  I went to see an amazing Dr for these.  The audiologist and his lovely assistant performed a whole barrage of tests on my eyes and ears.  They checked my hearing which was off the charts excellent.  They circulated warm and cold air into each ear which got me spinning really good (it is supposed to do that) and then they watched my eyes fixate (or try to fixate on a dot).  Then I saw the neuro-otologist.  This guy was amazing at what he does, an older fellow, I think maybe Russian or Polish.  He took over an hour with me to talk about things.  He made no mention of finding inner ear trouble which I assume includes labyrinthitis, vestibular problems, etc.  He did check my reflexes and noted that my knee jerk was a little hyper. I did not kick the ceiling or have multiple jerks or anything, but they jumped rather abruptly about 9-10 inches on both knees.

So this great Dr, tells me I have what he believes to be a hyper sensitive nervous system and the source of may of my problems is migrainal.  I don't have migraine headaches, but he told me men typically don't get the headache type of migraine in my situation.  He asked if I was a perfectionist and stressed a lot, to which I answered yes to all of those things.  He gave me an anti depressant and a panic disorder med that has a longer half life.  He claims this is going to work for me and I should feel the detached feelings and occasional bouts of vertigo subside soon.  He spoke a lot about tinnitus, although I rarely experience this.  If I clench my teeth really hard, I can bring a tone on in my head, but this is not something I have ever noticed as giving me trouble.  I too asked him about MS and if he though there was CNS trouble, but he says "the MRI was fine...you are hypersensitive and your senses are having trouble coping with environment etc, etc..."


SO yesterday it was back to see my Dr again, and he asked if I was satisfied with the diagnosis.  I said I thought so, but one thing I can not get my head around is the sudden onset of all these things like floaters, dizziness, myoclonus in the earhands at night.  He again attributed all of this to an anxiety that has worn on me, like bad tires going out...they are fine until they blow up!

I have considered seeking some counseling too, just to have someone to listen to me.  I have never had tendecies like this, and I am not a hyper chondriac, but I am beginning to feel like one and I am sure everyone else thinks I am now too. I have only been on the meds one day, but I still don't feel right.  I want to feel like I did before the dizziness.  I am prepared to deal with it if I can't have that back, but I guess since all of these symptoms are consistent in MS, and I am at the right age (32 years old), I need to get a handle on where this is headed.

So I ask you guys here, what do you think of all this?  
Do I seek out a neuorologist now, or give it some time to see if it works? (the meds, i.e.)
What do you think of all these Docs and their answers so far?
Do you buy the "hyper sensitive Nervous system", or does that sound like potential CNS problems?
What should I be looking for before I take it to the next step?

Thanks all.  You are an amazing bunch here and have helped me so much already.  I want to get back to focusing on my wife and kids and not all these symptoms.  I eagerly await your responses (realizing, I can not get a Dx here, but anything helps)...thank you!
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I would take the advice of your excellent neuro-otologist and let the anti-anxiety med work (counseling is an excellent idea, too). If one med doesn't work for you, another one might; they can have differing effects on different people, and it might take a bit of experimentation to find one that works for you.

"Hypersensitive nervous system" is not the answer to all symptoms (as some doctors would try to make us believe), but in your case I think it could account for most of them. Honestly--I would stop worrying about MS. Anxiety can cause the things you describe--the weird dizzy/disconnected feeling and the sudden brief feelings of vertigo, the twitches and tingling and many other things. "Hypervigilance" is another term used. Migraineurs are indeed thought to have "hypersensitive" systems, and it's true that you can have migraine symptoms WITHOUT headaches.

You have had your eyes and ears checked out by specialists. It wouldn't hurt to also see a neurologist, but I would bet you will get the same diagnosis of anxiety. There is stress inherent in just seeing more and more doctors and being disappointed and angry when the answer is the same. There is always time to go to a neurologist six or twelve months down the road if your symptoms don't improve. Nothing bad is going to happen in the meantime.

Try the meds, try counseling, try to reduce stress in your life, give it time. MS can cause a lot of weird symptoms, but many of those symptoms occur also in the general population, with other (benign) causes, including anxiety. In other words, your symptoms are what they call NONSPECIFIC.

You do not have any symptoms that stand out as red flags for MS. You've passed an MRI, an ENG, physical exams, and other tests. The group of symptoms that you have points very strongly toward anxiety. THAT is what you need to be treating--at least at this point. You should steer yourself away from the path of interpreting your symptoms as MS--just start looking at them differently.

Anxiety by itself can be very distressing and disabling. Don't let it get you. Treat it, in partnership with your primary-care doc (and the neuro-otologist, if he is following you). I wish you best of luck in getting improvement in your symptoms!
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Avatar_f_tn
hi there,

i know we communicated a couple weeks back since we share similar symptoms.  i'm sorry i didn't respond to your last post.  i have not been terribly together myself as of late.

this is only my opinion, and worth the grain of salt that it is, but, if i were you, i would make an appointment with a neurologist.  you are anxious about all of this, and rightly so.  if you are anything like me, no amount of xanax is going to erase your concerns about the possibility of having MS or some other CNS disorder.  i suggest that you do your homework and find someone reputable who thinks outside the box.

there are so many of us who do not fit a specific neurological profile and get slapped with a mood disorder diagnosis by doctors who aren't able to figure out what is at the root of our symptoms.  of course you are anxious about what's happening to your body, but i really believe it is unlikely that a previously healthy and active person would all of a sudden present with these kinds of symptoms as a result of an anxiety disorder.

i am going to send you a PM with my story so everyone on this board doesn't have to hear it again.  like i said, it is strikingly similar to yours.

also, you can still be proactive as far as your health is concerned and focus on your family at the same time.  just be mindful of the need for balance since it is easy to get super wrapped up in all of this business.  i struggle with maintaining that balance myself.

best wishes to you,
binx
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Avatar_m_tn
Wow - thank you both!

Binx, I got your message and will write you back personally soon.

Nancy, I appreciate you taking time to post your thoughts on this.  It really has been a roller coaster ride.  I suppose I am worried that I am in the beginning of something bad so that is why the limbo-land makes me so anxious.  It is reassuring to hear that these things are non-specific.  Like Binx suggested too, a neurologist visit will certainly be an option if things don't improve (or worsen any).  My neuro-otologist, primary doctor, and neuro-opthomalogist are all going to continue to see me, so that is good news.  I suppose I will find out promptly if anything else is going wrong.

Do any of you know what type of counseling person I should talk to? Are there specialists who deal more with these types of problems in people?  I seem to have very outstanding insurance, so I am fortunate in that I don't need referrals and such to see specialists.

I just want to focus on getting well right now. I miss the care free days!
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152264_tn?1280358257
Hi Drum. Yes, having unexplained symptoms is distressing and very, very bewildering, and people (including me!) naturally worry, at least initially, that some bad disease could be the cause. We want to get answers. That is only human nature.

For years I was very upset, puzzled, and eventually mentally paralyzed by the unresolved conflict of having unexplained symptoms which I was initially told, essentially, were MS (including a couple of red flags such as Lhermitte's) but later being told, essentially, that I was a hypochondriac for thinking about MS (even though it was a neurologist who put the idea into my head in the first place!!). Yet no one explained my symptoms otherwise. I wasn't even given the "anxiety" diagnosis that so many others get. (I did nevertheless try two different anti-anxiety drugs at the suggestion of my neuro-otologist, for the dizzy-wooziness I always had, but they did not help me at all. I definitely have some kind of inner-ear and/or brain problem because I have hearing loss.)

I now accept that I will not get a diagnosis of anything, nor any real explanation for my symptoms. I haven't continued to push hard because my symptoms aren't severe.

The important thing is to deal with the practical aspects by finding treatment that helps the symptoms that are significantly affecting your life. In your case this would be the anxiety.

I understand very well the wish to get back to normal functioning, the "carefree days," as you call them. I eventually (with the help of meds that improved my "attention/concentration deficits related to chronic dizziness," as the neurologist called it) felt that I came through to the other side and could resume feeling like I was living a pretty normal life, with some modifications. I acknowledged that the symptoms were not going to go away and that I was not going to get an explanation for them, BUT that I could still work and participate in family life, etc. Thus I finally got a feeling of having "come through to the other side."

I think you have an EXCELLENT chance of "coming through to the other side" and reclaiming your life, for several reasons: anxiety is treatable; you have good doctors following you in case anything goes really wrong; you seem to have a pretty realistic grasp of your situation; and you have access to counseling. Look for any counselor who deals with anxiety, especially health anxiety.

You WILL get well. You might have to deal with some of this stuff at a lower level for the rest of your life, but at least you will recognize and understand it--and most importantly, you will be able to put it firmly in the BACKGROUND and just keep living your life! You'll get there! :)
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572651_tn?1333939396
Hi DD - I went back into my journal and copied the following that I wrote on this exact problem - I hope it helps, if even a little.
------------------------
During my brief time in Limbo I was regularly sending my MS neuro faxes with lists of possible symptoms - things like jerking legs and twitching eyes.  Everything that I felt, I wrote down and sent off to him, since he had told me to report anything new to him and I had no idea what was MS related and what wasn't.

The next time I saw him in person we had a serious talk about my hypersensitivity to all my symptoms.  he gave me this analogy-


You know what its like when you go to bed late at night, and finally all the outside stimuli of televisions and conversations and everything else associated with noise is turned off?  You then lay in bed and listen - and you hear the floor boards creak, and the furnace cycle, and the rafters of the house shift.  All the noises you weren't hearing before are now quite noticeable when you stop and listen.  Our bodies are much like that - when we turn off all the other external noises and start to focus on the signals our bodies give us, we hear so much more than usual.  And in our heightened state of being hyperaware of being ill, we tend to hear even more.

He then went on to reassure me that this was normal, he encouraged me to continue to fax him if I wanted to, and that it would get better.  He was absolutely right, the noises my body was making haven't necessarily gone away, I have just learned that they go along with the creaking floorboards.  

Anxiety about every little symptom I believe is a normal process of learning that you have MS.  It does get easier. "

I realize you haven't been dx'd with MS, but it does sound like you have the volume of your body cranked up pretty high right now  - I hope you find a way to damper it a bit while you wait through the process of seeing doctors and getting tests.

Be well,
Lulu

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Avatar_m_tn
Hi DrumD8on,

Sorry to hear of your medical anxiety. I can definitely say that I relate to you since I have a lot of the same symptoms and get actual migraines as well. Anxiety *****, and as Lulu said, when we start listening to our bodies, we start to notice all sorts of "new" things that really aren't new at all.

In my case, this was actually a good thing. I have always been a moody, angry sort of person and never really knew or cared why. As it turns out, I have been suffering from chronic anxiety since I was 19 (11 years) and I never even knew it! I didn't realize it until I started to feel and hear my chest beat while I was absent-mindedly listening for other symptoms. At times, I thought my heart was going to jump out of my chest and almost went to the ER. I started reading several stories online and realized that I was just anxious. I smoked some Marijuana (which I was using recreationally at the time) and my heart raced for a minute or two, at which point my heart and I both relaxed.

I spoke to my GP about it and she said it was great that I figured out what was wrong, but to stop smoking Marijuana as it can lead to higher anxiety levels in the long term. I tried several prescriptions but none of them were as effective as Marijuana. I now smoke Marijuana legally as an MS patient in California. Really, the only thing it does for me is ease my anxiety :) Knowing now that it helps ease my anxiety, I smoke more frequently but don't let it interfere with work. Since I have increased my intake, my relationship with my wife and children has flourished and I am due for a raise at work when I get back from disability.

I'm not suggesting that you do anything illegal. if smoking Marijuana is not legal in  your state, there are several homeopathic rememdies that work for people with anxiety when prescription drugs fail. One that I know if is St. John's Wort. However, I don't believe you can take St. John's Wort if you are taking certain anti-depressents. There is also THC in pill form, although I cannot vouch for its effect.

One thing I can say is don't stop listening to your body, but if you can find a way to turn it down, you will likely be better for it. Keep trying to find something that works for you, and hang in there. I know how tough it can be, especially with the sensory stuff. I get so mad and confused at times in bright light, areas with loud sound, too many people, etc... that is unless I am under the influence :)

Kenny
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I know there are many autoimmune deseases that have crossover symptoms...such as lupus, fibromyalgia, ms, parkinson's, and even lyme desease. My dtr was tested for all this stuff because she had symptoms consistent with MS and they finally determined it was fibro. Her MRI was clear...now on the other hand, I was dx'd at 52 which amazed my neuro as he exploded, "How did the doctors miss this all these years! You've had MS 20-25 years!". I was told for years it was all in my head, stress, etc. My family consistantly told me I was lazy, dissed me at every turn as a hypochondriac and then I had my first MRI in 1994 and it was clear. I began to believe their criticisms and doubt myself and think I was nuts. Then again I had an MRI w/o contrast in 2007 and it was loaded with lesions...go figure. You are your own best advocate.

Cleveland Clinic has a wonderful MS clinic....and wonderful neurologists. Have you seen a rheumatologist? Did they check an ANA, or the blood test for lyme's? Do you have a "resting" tremor (where you don't tremor when you are holding something)?

I describe the twitching as the feeling of worms crawling under my skin. My daughter gets that too. Her rheumie told her that is also a symptom of fibro along with the fatigue, anxiety, etc.

I don't know if this has helped, but..no...you are not crazy...just frustrated.
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Avatar_m_tn
I want to thank you all for the many responses.  This is a very stressful time and this advice certainly helps me get through the day! I have good and bad moments, but I can say for sure something has changed inside my head for sure.  I feel like everything is a constant dream or something.  I wish I had a better way of explaining this, but I suppose in time it will present itself in other ways or work itself out.  I am hoping for the latter of the two.

I will certainly check out the counseling.  Day 2 of the meds now and I do feel SLIGHTLY better.  I am really hoping this works.  


I'll try to respond to each of you here.

Nancy - Sorry to hear you had such a long drawn out and uphill battle in trying to find some answers.  I am starting to get the hypochondriac label as well I am sure, as my doctor just wants me to stop questioning every answer.  True, I have a lot of great doctors telling me the same thing, but it is just those unanswered parts that get the best of me (the ring and pinky finger going numb at night, the uneven pupils that resolve and recur randomly - the 24/7 surreal feeling and occasional dizziness spells...).

I don't have hearing loss (yet), but I certainly have an "off balance" feeling.  What is even stranger is that I have not yet stumbled or fallen, but I just always feel like I am going to.  I attribute my lack of falls to the fact that I do advanced yoga and have been for a long time.  I can hold the most complex of poses for long periods of time and never even teeter slightly, but it is because of this good balance that I can feel it is off a little too.  the slightest sense of motion I notice right away.

I think you are right in tackling the anxiety components...after all, I suppose if it is headed that way, there is nothing I can do at this time except wait for worse symptoms to appear or just get better.  I am really glad to hear you began to feel some normality in life again.  This is the one kicker for me.  I just can't enjoy things really now.  I see people doing things and wonder how nice it must be to just not have a nagging distraction like this constantly nipping away at you.

Thanks for the encouragement and kind words.  This certainly does help to hear it! Best wishes to you too.



Lulu - wow that rings with a certain familiarity to me!  How early on did you suspect you might have MS?  Were your symptoms coming and going or constantly there and crescendoing up until your Dx?  I see you are in Dayton....I live a little south of town.  Small world!  Thanks for the advice and information!




KenDub - I am sorry to hear about your recent Dx.  I read your story and I hope things work out as smooth as possible for you.  How long before the ON did you suspect you might have MS.  I know you said your mother had it which I am sure raised some red flags, but were there any mild symptoms leading up to your Dx and the eventual ON?  Do you know if you have RRMS?  Best wishes to you.


Willowwoman - I am so sorry to hear your MS was missed all those years.  I don't know what to say! Do you attribute it being overlooked to the lack of awareness in the past?  It seems in the last 5 years so much more information is available.  I have not seen a rheumatologist yet.  It very well could be on my list.

Thanks again all!  I'll talk to you all soon!
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