Looking for a direction to go

I will attempt to make this short and concise.
I have had the following symptoms over the past 6 weeks to varying degrees:
Fatigue-(not so bad in A.M., gets worse as day progresses. is helped somewhat by lying down. physically exhausted)
Muscle weakness- arms, hands, legs, ankles. Unable to lift things I used to. i used to be active in tending to my house, landscaping, improvements etc.  difficult to lift my one year old.
Unsteady gait imbalance-(tend to lean to left, friend and relatives remarked that my gait is very wide. slap left foot down when walking)
Hand tremor- occurs when reaching for and lifting glass/cup to mouth and when hand is outstretched. Mostly in right hand.  ring finger tends to "spas out" towards palm.
weird sensations-numbness in lower thigh, tingling in right and left toes and hands, skin crawling in arms and legs.
double vision- when I look to right and down.  GP says right eye does not track, gets stuck.
Pain- shooting electric pain in arms and feet. muscle cramps in outside, bottom of feet and toes.  Joints sore.  Muscle temderness on both triceps were they connect to bone?

I have recently developed a sore throat. I do not have a fever or any other flu-like symptoms. A little difficult to swallow. Neck muscles in front and sides that connect to ear are tender to the touch as if sore or strained. this developed 8 days ago.  Ibuprofen seems to aliviate some of the pain when I swallow.

I should note that I am hypothyroid (diagnosed 1/99) and have been taking L-thyroxine with no problems.

I did seek out a neuro 4 weeks ago.  He examined me for 10 minutes.  did some kind of nerve test on both arms.  Had me stand with feet together eyes open (swayed) and closed (fell over).  Said I have cerebral damage and carpal tunnel in both arms and should seek out a good psychiatrist do to anxiety. huh!?
Scheduled an EEG for following week which turned out normal.

GP ordered MRI early on because he suspected Acoustic Neuroma.  MRI normal.

Thyroid level normal
Diabetes negative

no other tests have been performed yet

GP says I am positive Romberg, cannot tandem walk, difficulty with right leg on heel to shin. Difficulty following his finger with my right finger.  Did not comment on reflexes.  No response at all when checked for Babinski.

I am not looking for a diagnosis here online but I would like to found out a direction to go in since my GP hasn't told me what he suspects.

Thank you for your time in answering my question.

Regards,
John T

[CCF Neuro[P] MD, RPS]

Dear John T:

From the symptoms you describe I would think that you have a cerebellar problem.  Although, not all your symptoms could be fit into a cerebellar etiology.  This might be due to a process that is not structural in nature (such as a stoke or hemorrhage in the cerebellum).  I think there might be a reason to do a spinal tap and check for possible abnormalites of MBP levels, IgG synthesis, ACE and VDRL levels, atypical cells and prion protein.  I think that a paraneoplastic work up should also be performed.  I am assuming that routine blood work of CBC, electrolytes, B12 and folate level have been done.  You might want to have a serum electrophoresis looking for myeloma or MUGA. Bilateral carpal tunnel might suggest amyloid.  I would have your GP check for this.  Negative results from all these tests would rule out the really bad things and might give insight to what further tests should be performed.

Let us know how these things turn out.

CCF Neuro MD

[John T]

I forgot to include some other information.
I am also a recovering alcoholic (6 months)
and have been on Prozac for 5 months.

Age: 34
male

[CCF Neuro[P] MD, RPS]

Dear John T:

Thanks for the added information.  Alcohol can severely effect cerebellar function, but we usually see it in older alcoholic.  However, if you were a really severe one, a decade or two can cause cerebellar dysfunction.  But, if your B12 level was okay, then there is less of a chance that alcohol is causing your problems.  I would still do as I recommended.

Sincerely,

CCF Neuro MD

[Wendy Q.]

I have been having a problems with blurred,double, and dark     spots in my vision for almost three years now. It started with   double vision on brief occaions and now it is almost constant   blurred vision with dark spots. I did have about two months with  no vision problems. However it came right back.  I have seen an   eye doctor she said my vision problems were not coming from my  eyes.  I also have muscle weakness in my legs and left arm.  I dribble from my bladder.  I have numbness in almost every part of  my body including my vagina.  I have episodes of pins and needles.  Usually the symptoms last at least a day but can last up to a week.  I have also had severe fatigue.  I have increase in reflexes.  My symptoms come and go.  I have seen two neurologist one which did a MRI and lumbar puncture everything    appeared normal.  Second MRI was done because I still was having  problems and had no period for eleven months. They found a very  small pituitary tumor which is not big enough to be causing me   all these symptoms.  I have seen two internist.  I have seen two  GYN's.  The only doctor that will even listen to me is a GP. He  can't do much to help me.  Just looking for advice.  Thanks. Also important I have been told everything from I am depressed,   having migraines with no headaches, and in menopause( at 28 I do
not think so).

[Bpowell]

To WendyQ
   I am a 39 year old female and you just described me when you described yourself. i have the same problems and the same tests over and over and no dignosis,Maybe stress maybe migrane (migraine) maybe this maybe that..Who knows what the heck is going on the docs here sure do not..i know I am not depressed, I am not stressed except due to the stupid symptoms...The doc says internal stress..What the heck is internal stress. i am happiley married with beautiful children, and comfortable...
I have just tried to learn to cope with this, its been 4 years and its getting worse not better,but what do i do?? Take care and best of Luck to all of you here...

[KSB]

To Wendyq and Bpowell:
I'm waiting to see where this goes...  I've had similar problems intermittently for over 6 months except for the vision problems.  Same thing with negative tests, go see a shrink, yada yada...  I've also recently begun having eye pain without any other weird visual symptoms so I don't know if this is related or not.  I hand it to you all for putting up with this for so long without a diagnosis.  It drives me nuts not knowing what is happening to my body.  I keep holding on to the hope of my neurologist that sometimes people have these sorts of problems that eventually go away....

[CCF Neuro[P] MD, RPS]

thanks for the comment.

CCF Neuro MD

[Wendyq]

To BPowell,
Where are you from and how many Doctors have you seen?  If I were you, I would go to as many different doctors as I could
until someone listened.  I'm interested in knowing what some of
your symptoms are.  Do you feel better for weeks and months and
then it just comes back?  Or is it constant?  I have periods
when I feel wonderful.  That is sometimes two weeks or two months
When it comes back it is always worse than before.  It also takes
longer for me to get to feeling better.  I am not depressed either.  If this goes on much longer I will be.  I have been having problems now for almost two years.  I still have to go to
work and function even when I feel I can not get out of bed.  
Please let me here back from you I would like to know a little
bit more about how you feel.

[John T]

this is a follow up to my original post, "Looking for Direction".

I stated in my original post that one of symptoms was imbalance and lack of coordination.  With that in mind I would like to share an observation.  I noticed that when I am standing with feet roughly a foot and a half apart I have the tendency to fall backwards. But the really interesting things is that when I turn my head to the right my sence of imbalance is remarkably pronounced.  This also occurs on a lessor scale when head is pointed straight and I gaze to the right.  Conversely, when I turn my head to the left it seems that I am able to mantain by balance more easely.  Now a question comes to mind.  I also stated that I have double vision when gazing to the right. What are the possibilities of a connection between these two?

Having said all that, I still wonder if all this is in my head, that is, some type of somatization disorder or "pseudoneurological" in nature.  The neurologist that I saw 6 weeks ago thinks so.  I mentioned to my GP that I think that it might be a conversion disorder, but he just looked at me with no response and wrote something down.

I am still pressing ahead with an appointment in February with another neurologist for a second opinion.  I have also sought out a clinical neuropsychologist for a consultation and exam.  I have been concerned lately about my congnitive and abilities and emotional state.  Do you think an examination from a psychologist is warranted?  Could he tell me if it is a conversion disorder?  The  first neurologist I saw examined me for 15 minutes and then said for me to seek a good psychiatrist.  I'm not sure if I want to do that just yet.  Though I am open to going.

Bottom line, I just want to know what is going on with my body.  For symptoms etc., please see my original post of which I am responding to.

I would also like to say (and I think I may speak for all or at least a majority in this forum) that you folks are doing a wonderful service.  Thank you for taking the extra time to provide direction, answer questions and perhaps put peoples minds at ease.

Sincerely,

John T   :)

[CCF Neuro[P] MD, RPS]

Dear John T:

Seek out all your possibilities.  Yes, a conversion disorder can induce what you describe, but so to can a cerebellar disorder or posterior column disorder.  Just make sure that the neurological things are ruled out.

Sincerely,

CCF Neuro MD

[Rhonda]

I need some advice on what my next step needs to be.  I had a MRI in 1989 that showed a herniated disc at L5-S1.  The doctor suggested surgery but I was only 14 years old and was terrified to do it.  After years of continuous pain and suffering, I searched for another doctors opinion.  A MRI in May of 1997 showed severe degenerative joint disease at L5-S1 with focal disc protrusion without spinal cord or nerve root compression, with a small annular tear at the L5-S1 level.  They also diagnosed me with facet arthropathy of the lumbar spine.  October of 1997 a pain management clinic administered lumbar epidural steroid injections of L3, L4, and L5 bilaterally.  Did not help any with my pain.  Then in January 1998, they done a radio frequency thermocoagulation bilaterally of L1, L2, L3, L4, L5 and S1, at which time it was noted sacralization of the L5.  Also noted was two additional disc below the L5-S1.  The RFTC ablations of the evervation of the lumbar facet joint temporarily helped.  But soon the pain was excrutiating again.  In March 1999, they administered bilateral lumbar radio frequency medial branch lesioning because it was seen I had lumbaralization of the first sacrel segment and multiple leaks in the facet capsules.  My right L5 radiculitis has decreased sensation on my right thigh.  The doctors also told me that my right leg seemed to be around 3/4 inch longer than my left.  Which, they said, would cause all this damage when I walked and moved.  They inserted a shoe lift and that still didn't help.  I have suffered long enough.  My pain is so severe that I can not have a normal life.  My families and my whole lives are consumed with dealing with the pain and trying to find myself help.  I am now just 27 years old and have been hurting like this for 14 years.  That's long enough.  I am now taking Oxycontin 40mg 3XDaily, Neurontin 300mg 3Xdaily, Vioxx 1Xday.  The doctors have already tried physical therapy, traction, the TENS unit, the shoe lift, acupuncture, chiropractic things and so much store bought stuff it's not even funny and they still have ran out of options.  So I am left on all this medicine which seems my tolerence is getting so high now that I take all that and I'm still hurting.  I am almost at the highest medicine also.  PLEASE help me!  I am willing to travel or to try any new experiments. With all the new medical technology evolving, my hopes are that very soon there will be something out there that someone knows maybe how to fix me or help fix some of the pain.

[John T]

Dear Doctor,

Thank you for your previous advice and direction regarding my diagnosis.  I have posted previously (see "Looking for direction", Dec. 29, 1999.)

I have since had 2 appointments with a second neurologist who I like.  I have also had extensive neuropsychological testing done.  I will outline the results at the end of this letter.

I apologize for the length of this letter, but I find it necessary to provide as much detail as possible.

Here is a brief outline/update to ongoing symptoms:


1.Vision
Diplopia
?horizontal homonymous diplopia
both left and right gaze
images appear to super impose at an angle
diplopia while gazing up and down
difficult to focus when shifting gaze
NOTE: opthalmologist had no comment on this.  Neurologist has not elaborated on his findings regarding this either.

2. Spasticity. ?Contractures
Mostly distal, although I have significant muscle tightness and stiffness in neck, mid to low back, hands, feet, ankles, calves.
The spasticity ranges from mild pulling or twitching sensation to very painful spasm.  These primarily occur in outer toes, ankle, top of foot, bottom of foot, lower to mid calves.  My new neurologist has prescribed Adalat CC  30mg (calcium channel blocker) to be taken at night for nocturnal spasms.  This medication has made no difference.

3. Fatigue
Same.  Still get fatigued mentally and physically as day progresses.

4. Tremors
Intention tremor not as bad. I would note though  that it seems to have developed into more of a jerking motion. That is, occasionally my right hand will jerk at the wrist and arm will retract(?) and my neck and hips will jerk.   Sometimes my head will start bobbing.  I also get muscle twitches often in various places.

5. Balance
I walk with a wide gait and  somewhat unsteadily.  I have trouble if I turn quickly around a corner, have to step over something and on stairs.  PCP and neuro have observed me swaying slightly with eyes open and swaying dramatically, almost falling over.  Positive Romberg?  They didn't say.  I have fallen 4 times since November 1999, once spraining my wrist.

6. Cognitive
I have trouble focusing, remembering things.  I just feel mentally burnt out.  It is almost always worse in the afternoon between 1pm to  6pm.  It doesn't matter how much sleep I get.  I sought out a neuropsychologist to inquire if my condition was psychosomatic.  The following is his summary after 6 hours of testing:
(given the length of his concluding remarks, I am extrapolating pertinent information.)
"Mr. T is currently experiencing significant difficulties involving a number of neuropsychological areas.  He is displaying bilateral motor weakness and slowing.
There are difficulties with sensory processing, left body side.
Pproblems with attention, speed of processing.
Memory difficulties might be secondary to the problems with attention
Displays significant problems with visual-spatial

[CCF Neuro[P] MD, RPS]

Dear John T:

I am not sure what to tell you.  I would get an opinion from someone at UCSF or Stanford.  

CCF Neuro MD