Anxiety and trying to get other opinions (My Dr. isn't listening)

[mhsdrum]

Hello!  I would like to thank everyone in advance for taking time to read my post.  Sorry for the length of it!  Any answers or suggestions you have I truly appreciate.  I realize I can't get a MS Dx here, but I do frequent these forums and see there are many great answers to questions, so I wanted to post.

That being said, my story begins about a month and a half ago (around mid Feb, 2010).  After having a sinus/upper resp illness (one that came back a couple times over the winter) I suddenly became progressively more and more dizzy, eventually near constant.  As Feb went on, the dizziness became pronounced and was with me 24/7, however only when up and moving about (sitting, standing, walking, etc.)  The only time it subsided was at night while sleeping.  Additionally, my ears felt a constant need to "pop."

--A little note on the word "dizzy" too:  The feeling was probably more of a surreal feeling or being in a dream state constantly, almost feeling as though I was looking at the world through some one else's eyes.  I was never (and am still not) running into things or having any spinning or severe balance issues.  I am still doing yoga and am able to hold advanced poses for long periods of time with no problem.  It is just more of an uneasiness - inside my head/eyes/ears kind of thing.  

Back to my story...This eventually brought me to my family doctor where he did actually find a middle ear infection and sinus infection.  He attributed my "dizzy" feeling to a possible inner ear problem, either caused by a virus or some pressure from my middle ear infection.  I was given cephalexin and told to get rest, fluids, etc.  

Now about this time, I began noticing other things that seem to had all come on nearly simultaneously: small dark gray floaters in my eyes (they look almost like wisps of smoke but never double vision or blurred), tingling in my hands and feet, and perhaps most alarming were my hands were falling asleep at night, seemingly regardless of what position they were in (straight, bent, being laid on, etc.)  I began to worry about MS.

I made another appt immediately to see my doctor and he did some coordination and reflex tests and checked my eyes, but said that as far as he could tell, I showed know serious signs of anything.  He did order a brain MRI without contrast to be done right away and sent me over to the hospital.  It came back completely clean, but did show sinus disease.  The doctor at the hospital agreed and said all these should be expected with my sinus issues and my other sensations were due to anxiety brought on by breathing etc.  I just found that hard to believe!  I really didn't feel anxious!  But I suppose it is possible for it to be underlying.

Since then, I have been put on anxiety medication (originally Xanax, but now switched to buspirone which I take 15 mg a day).  This seems to have stopped many of the tingling and weird sensations I was feeling in my limbs, however the dizziness is still there 24/7 and does not seem to be improving at this point.  I still get the hand numbness, though only at night and it seems to be isolated to my ring and pinky fingers and outside of the the hand.  I have heard this is part of the peripheral nerve system, so it could be possible cubital tunnel issues, though I am not sure.  I do perform as a full time drummer, so my arms are bent a lot of the time.  I am trying to sleep with my arms straight more to see if it helps.  It seems to be so far.

The only other strange things I have noted recently are the fact that I seem to have tremor in my left hand when in certain positions like typing with my wrist resting.  When I raise my index finger, it really shakes a lot.  I have a slight tremor when writing with the left hand too (I'm a southpaw).  My left pupil is slightly larger than my right one.  My pupils also seem to dilate and shrink rhythmically together even when in a steady light.  A barely noticeable buzzing is also present in my right foot from time to time, but it is never constant.  I sometimes I wonder if I am just paying too much attention to the littlest things and the buzzing is my own pulse, but it is still there.

Sorry for the lengthy post, but after repeated calls to my doctor and stressing to him that these things aren't going away, he just doesn't seemed concerned.  I think the clean brain MRI was what convinced him.  Unfortunately, I know from reading, that something like MS is often difficult to determine right away.  Additionally, I know how much doctors despise a self-diagnosis, so I am trying my best not to bring that avenue up again, but I do feel inclined to inform him of anything unusual I have going on.  I meet with him again in 2 weeks.

I did make an appt with an opthamologist (tomorrow) to have the floaters and pupils looked at. I am taking a copy of my MRI too. My doctor agreed with this decision.  I have also made an appt with a vestibular doctor who is a neorotologist to check for whether it is truly an inner ear issue like labyrinthitis etc.

I have been getting more stressed recently. My wife is beginning to see this take a toll on me, and I am finding it hard to talk to anybody because they all think I am crazy if I go on too much about these things.  My job requires me to travel a lot and I just want to know if my doctor or I am missing something.  It would obviously affect the course of my career if I became diagnoses with MS.  Based on what you read here, what is your opionion(s)?  Should I be talking to someone else?  A neurologist?  Do my symptoms seem consistent with other people with MS?  I have three kids too, so worry a lot about being able to provide for them.  Any ideas/thought would be greatly appreciated!

[Ufrustrated2]

>> I guess I am a little concerned that he may not be fully aware of my symptoms.  I think this started when he would attribute everything to anxiety or the mystery virus that attacked my inner ear.

Welcome to our crew. You'll see you have much company in regards to your concerns and sentiments.

Most here have been labeled with all kinds of strange "mental" illnesses, to "it's your job, so change jobs" to "there is nothing wrong with you so go". only to find out years down the road there was in fact an organic illness as a or the culprit.

Whey your body is telling you something is wrong the body can't scream out the "cause", all you know is something is wrong.

And when doctors, whether on purpose or not, don't seem to be listening, responding it adds more frustration.

It helps when they finally get around to getting some objective data -- for most patients.  Even then, some docs are clueless, etc.

I'll jump over to the other thread and see what new news you got

[mhsdrum]

Hey all,

I just wanted to let you know I started a new thread since I have seen some new docs

[mhsdrum]

I had my opthamologist appt this afternoon.  They had me in there for hours.  I think the doctor was way overbooked, but they checked my eyes thoroughly and never found anything bad behind the floaters.  This left me relieved but also more confused.  I asked him what he thought of my MRI and he said it looked normal other than severe sinus disease.  He said my sinus disease is in every possible cavity in my head.  It was hard to get any real solid answers beyond my eyes, but he recommended an ENT which is the next thing to check.  I have it schedule for Mon 4/19/10.  They are going to do balance and table tilt tests on me to see where the possible vestibular damage might be.  

My family doctor says the hand/finger numbness is on the back burner until we locate the source of the balance/lightheaded issues.  It is tricky because I have a tough time explaining my dizziness.  It isn't really a dizziness at all, but just an occasional uneven feeling which is always a sensation of disconnect, as though I were in a dream or something.

I am still getting sensations like the buzzing in the right foot and occasional single pin ***** feelings on my fingers and feet.  That kind of stresses me out, but the big test is going to be this next week when I leave town for a week.  I am really hoping nothing progresses during that time.  

Thanks again to all who have commented.  I would still love to hear any thoughts you have.  Hopefully I be able to get to a computer this week.  Have a good weekend all.

A

[mhsdrum]

Binx,

Sorry to hear you are having some of this too!  Wow, sounds like we have a lot in common.  What are your other symptoms?  What else are they watching for in your MS workup?

I tried sleeping at an incline last night and made sure to keep my arms straight and surprisingly, no numbness at all.  My biggest problem today was the dizziness again.  It is really starting to take a toll on me.  I am not sleeping very well and I just have a bad feeling about all of this.  I am hoping I can at least learn something more today when I go to see the opthamologist.

My doctor is really starting to come through more.  I wish I could change the title of this post because he is really stepping things up.  He wants me to take a table tilt test and run some tests on inner ear function.  I guess we just keep moving down the list until everything else is exhausted.

Thanks again to everyone for the comments.  I'll post again after my appt today!

[illinwithoutacause]

dear drumD8on~

oh my gosh--so much of what you described resonates with my own experience during the past 15 months since the bizarre neurological symptoms took over my life.

i had the same thing happen with my pupils--the random dilating in ambient light which i have been told is called "hippus" and most docs see it as completely normal.  (i never had it before i started feeling sick, so it wasn't normal for me.)  my left pupil is also slightly smaller than my right, which my neuro-ophthalmologist has also said is a normal variant.  (again, i didn't have that problem before.)  my eyes seem to burn a lot of the time and i sometimes get shooting pains in them, but not that often, and i have a lot of floaters.  sometimes it's like i'm looking through a screen.

i have the fuzziness in my head and my vision that you describe--not dizzy per se, but just not quite right either.  i have the twitching and the buzzing and my ring and pinky fingers on my left hand fall asleep at night, too.

i have had clear brain MRIs, but a recent cervical spine MRI revealed inflammation on the anterior cord.  i am seeing a new neurologist who said that my symptoms don't sound like MS to him, but with the cord inflammation, i am now in the midst of an MS workup.  i am also being seen by a rheumatologist since i have probable sjogren's syndrome.

i wish i had some answers for you, but since i am in limboland myself, i just wanted to comiserate with you based on the similarities of our symptoms.

take good care, and i hope your ophthalmologist appointment tomorrow is informative.

best wishes,
binx

[mhsdrum]

Thanks for the post Mistylee.

Yeah, my pupils got me wondering too.  I did read a lot of people saying that this can be common, I have never noticed it in my own eyes.  It seems it is most noticeable in the morning when I first wake up.

About your numbness on the outer fingers...I have heard that this might indicate a problem with peripheral nerves which is different than MS (which focuses on CNS).  Have you heard of this before?  Do you know of or have you heard of many MS'ers complaining of this type of occurrence?  There is so many questions and you are totally right.  It is going to take some time for me to get to the bottom of all of this.

What were your other symptoms?  Did your numbness end up lasting into your waking hours as well?

Much thanks!

A

[mistylee]

Hi there,

Glad you are getting your eyes looked at.  Differrent pupil sizes is not normal and needs investigation.

I had the same numbness at night of ring and pinky but only during a relapse of symptoms. Gradually over time it has progressed to the whole hand and wrist on both hands. I am a possible MS.  I donot have cubital tunnel . So you need to get a nerve conduction test done to determine this.

You have a few things going on here and you are on the right tract getting them looked at.  I have had symptoms for 4 years so it does take a long time to get answers.

Good luck , let us know what the opthamologist says.

Mistylee

[mhsdrum]

No problem at all.  You did not come off as harsh.  I think you made a lot of sense.   :)

I did actually start keeping a log on my journal of what I am experiencing each day so in the event I do need to go a step further, I will have all these things documented.  Looking back on the posts I already made, i see this is crucial as it is impossible to remember everything. I had forgotten nearly half of the things I wrote down!

Hopefully I'll have some good news from the opthamologist tomorrow afternoon!

[rendean]

I hope I didn't sound too harsh, when I re-read my post I wondered if it would come off as harsh. Didn't mean to sound that way.

One thing I didn't write previously was that you should keep a timeline of symptoms. This would then be easier for you and your doctors to see how symptoms present and which treatments work and which do not.

There is a page in the Health Pages about making a timeline as well.

Good luck!!
Ren

[mhsdrum]

Thanks rendean!

I agree.  I don't mean to make my doctor sound bad.  He is really great, I guess I am a little concerned that he may not be fully aware of my symptoms.  I think this started when he would attribute everything to anxiety or the mystery virus that attacked my inner ear.  It was just frustrating and I felt I needed to investigate on my own instead of just letting myself get worse and therefore more anxious.

I became a little more alarmed when I read about a lot of people with MS seeing floaters.  These all came on so suddenly along with the dizziness and other sensations, I naturally thought the worst.

I had 2 blood tests done (one at my doctor's office and the other at the hospital).  I assumed they look for these diseases as well in the blood tests, but I never actually saw a report on what they checked me for in the blood tests.  I wonder if this is something I can get access to, or if I would need to approach my doctor directly about it?

Thanks for the link.  I'll check it out now.  I'll be in touch.

A

I will work on keeping my worrying down and will definitely keep you posted on the results.  I appreciate you taking time to reply.  I am sorry to hear you are living with MS.

[rendean]

Hi and welcome to the forum! I read your post and no apologies ever needed for anyone who is posting. I also saw your comment that you realize we cannot provide a diagnosis, just support and suggestions.

I actually think your doctor is listening to you. He has ordered tests appropriately (in my opinion) and seems to be acting on each symptom you present.

IMO, I also think you have the right consultations lined up. I understand the worry about  a diagnosis that would change your future and the way your world turns. I am living it. But, please don't get ahead of yourself about MS or any other disease for that matter.

Worrying will not make a disease present itself sooner and only masks the real symptoms you may be having. Some of your symptoms present like neurological symptoms but as you said they fit other diseases as well. I  immediately thought of cubital tunnel syndrome when you described the ring and pinky finger numbness. Yes , it's neurological but it's a pinched nerve causing the symptoms. A mechanical nerve entrapment not a CNS disorder.

Have you had any of the MS mimics ruled out? Lyme, lupus, etc? If you go to our Health Pages at the upper right hand corner of the screen, next to the yellow icon, there is a wealth of information there including a page on MS mimics:

http://www.medhelp.org/health_pages/Multiple-Sclerosis/MS-Mimics---Part-I/show/375?cid=36

I do hope you don't have MS  and it's just bad sinuses and cubital tunnel. Let us know how things go after your other consults.

good luck,
Ren