strange nerve symptoms

Hi, I know that I have posted here before but I was hoping you could give me a little information.  Ive had the following symptoms for about 4 months now:
tingling, burning sensations (feels like nerve buring) throughout the entire body-including face and head, cramping sensations in hands, ankles, elbows, shoulders and in the muscles, muscle twitching and trembling (started about 1 month ago), and muscle stiffness (mainly in shoulder and neck area)  About 2 months ago I developed ear pain in the right ear.  The doctors thought it might be an ear infection and treated it with Septra-didnt work.  ENT doctor isnt sure whats going on either, but he put me on a medrol dose pak-didnt work.  I get a lot of pressure and pain (almost a burning pain) in the right ear and sometimes I can feel it the left ear as well.  Ive seen 3 neurologists and have had MRI's of the brain, and back, 1 EMG test of the right arm and leg and blood work checking for almost everything!!  Everyone says that my symptoms do not point to one particular disorder or disease and they arent sure what to do.
My questions are:
1.  My lyme tiher came back as 1.036 (its not positive, but it wasnt negative either)  does this necesarily mean anything?

2.  During my ear exam they did a hearing test.  The result was: mild hearing loss at 250Hz AU.  Slight conductive component in right ear.  No acoustic reflex decay in the left ear (IPSI) and CNT in the right ear.  Can someone please explain what these results mean?

3.  Can ear pain be related to nerve problems and is it possible to have all the symptoms I have and have them mean nothing is really wrong?

Thanks again for your time

[CCF neuro MD MM]

I do not think that the lyme titre is significant and it certainly does not relate to your symptoms.
As regards the ear test the terminology is somwhat uncleart as you have quoted some abbreviations which are used by otologists as opposed to neurologists and may need to ask that specialist about the exact meaning. It would appear that the hearing loss is at least in part due to a conduction probem, that is it is related to the middle ear structures which conduct sound rather than nerve damage.
All pain is mediated by nerves, it can rarely be primarily due to a nerve problem, but in most cases it is due to nerves mediating the pain signals which are caused by another independent processs.
Obviously if you have all these symptoms there is SOMETHING wrong, but it would at least not appear to be a progressive or systemic process, nor is it related to a serious identifiable disease like a brain tumor, infection of inflammation.

[[e-mail]]

Hi,

I've had similar problems, but not as advanced as yours..

I've developed a burning in my arms and legs, which is not debilitating, but an awful nuisance.  The doctor has no idea what is going on.

All tests seem to be ok.....

Anyone having anythoughts?

[I've Been Through It...]

To NAL and DCTahan:

I've been through a very similar "thing." Do a search for my post of May 1, 1999 titled "Ongoing Bizarre Symptoms..."

It's a year later now and I'm 99.9% back to normal. Even with the multitude of specialists I consulted, a solid explaination was never offered other than post viral syndrome or Guillain Barre variant.

I had every test possible, all were negative. Indeed I was the picture of health. Eventually, testing turned up some thryoid abnormalities (acute silent viral thryoiditis) which simply verified that my entire nervous system suffered a viral attack. Incidentally, over the course of several months, even my thryoid returned to normal.

Trust me - in the absence of abnormal test results, there is nothing seriously wrong (I didn't believe this myself at the time I was so sick - but I believe it now) and you will eventually recover. It takes time and there's not much (in my experience) that can be done while your body heals itself.

Good luck.

[SMITH--athletic 35 yr old female]

A lot of people seem to have these symptoms
1996:  just didn't have the same stamina
1998:  very fatigued.  Had to sleep now
1998 SEPT:  muscles began tightening
1999 MAY:  weak.....couldn't lift weights anymore.  Muscle
           tightening (causing patella tendonitis)
     JULY:  painless muscle spasms and heat sensations face also
     AUG:  muscle spasms almost like charlie horses, but not  
           quite, had to sit down nor fall down...couldn't be up
           for more than 20 minutes.  Tremors.  Pain deep in my
            muscles.  Began taking B complex and symptoms
            subsided slowly but never completely gone.
      OCT:  felt better so tried swimming...fatigue cumulative.  
            Muscles still very tight.  Pain came back along with
            pins and needles ....knives and daggers.  At times
            felt like someone was in there pinching muscles.
      NOV:  Began taking B12 shots (though B12 was low normal
            Began dreaming immediately, pins and needles gone.
            Muscles still tight.  How long til I get better.
Still can't stretch or exercise.  GOING NUTS!

[NAL Re CCF Neuro]

Thanks for the information.  Would a high b-12 test indicate anything?  I know I should ask my doctors about this, but im to a point where I dont trust them anymore.  Is there ANYTHING that I can do or even take that could help with any of my symptoms (such as the burning, twitching and tremors)?  Thanks again

[Lee]

My symptoms have been very similar and have lasted about 3 years.  After several neurologists I was finally diagnosed with a HYPEREXCITABLE PERIPHERAL NERVE DISORDER.  Has anyone heard of this syndrome?? I would appreciate any information.

[Another Lee]

6 years ago I had similar symptoms/finally diagnosed as Lyme: Lyme tests are notoriously poor especially the ELISA....and about 30% of patients are actually seronegative on these antibody tests. So it often requires a doctor who attends Lyme conventions and sees the various presentations of Lyme. Your equivocal Lyme test, even by CDC surveillance standards, should be followed up by a western blot that actually reports ALL bands.   I had tingling, burning, radicular pain that I felt in my Right upper quadrant, burning soles, icy shins, twitches and fasciculations, fatigue and a stiff neck with crunchy sounds. It would all wax and wane, which is typical of spirochetal illnesses.  

Once again..I had very similar symptoms...after 1 and 1/2 years on antibiotics I am "almost" at 90% of functionality.  This disease and the fact that most Dr.s know nothing about it effectively brought my active life to a screeching halt and left me in a financial downspin.  Find a good lyme doctor via a lyme support group in order to truly rule out Lyme.

[To Original Poster: From Maureen/Laida@]

I have suffered with this EXACT thing almost for just about 4 years.  I also had the piercing ear pain - just excruciating.  It felt very deep as if it were coming from behind the eardrum.  I am much better but still can get the occasional "jab."  What could this be for god's sake?  I also twitch, burn, ache, etc. continuously.  Until the age of 35 I was the picture of health; so healthy I delivered my daughter at home with nurse midwives! When she was about 9 mos. (and there had been some serious stress in the meantime) I began feeling "viral."  It just spun out of control from there...I've tried EVERY type of doctor there is including neurologists and neuromuscular doctors, infectious disease, rheumatologists, etc.  It is very difficult to accept.  Do you get mouth sores by any chance? That is another one of my lovely symptoms which has not been diagnosed despite visiting numerous MDs (dentists, oral surgeons, oral pathologists). There are many of us out there - suffering syndromes involving neurology and virology at the same time.  I wish there was more research taking place.  It sure has ruined my life.  Good luck and write if you think we can support one another.  Maureen

[Cerebellum Problems...Ataxia...Falling D]

Hi CCF Docs,  I have had a Occipital Craniectomy for ACM type 1.
This was 7 mos. ago, now I am having extreme problems with my gait and my legs just all of a sudden giving way.  I recently fell down a flight of stairs injuring my leg.  Is there anything
I can do to provent this from happening to me?  Orthotic Devices or Medications to help control my balance and weakness in my legs?

Thanks, Sincerly Ann

[Nancy re: Maureen]

Sorry to hear that you are suffering as well.  Im 27 and have 2 young kids.  Im so scared that they'll never find out whats wrong with me!  If youd like to stay in touch, leave me your email address.  Best of luck to you.
Nancy

[Nancy RE j.p.]

Did you ever have an MRI done of your cervical spine?

[J.P.]

Similar symptoms here, after 3 yrs discovered bad early onset cervical spine problem, involving degenerative osteoarthritis, still awaiting trtmnt, symptoms= head full feeling, burning pain all over body and into face, myoclonus, fasciculations full body, tremors, headaches.

[leanne thomas]

It all started in september of 98, I've had burning pain throughout my body mostly in my legs, back,and arms.
tremors as well in my arms and legs. In nov. of 98 it went away completly, only to reoccur in sept. of 99 and is still prosisting till present time. I've been to three different doctors and 1 specialist. I am very concerned that I have MS but the doctors are telling me that it is anxiety depression or stress. Could you please let me know any more information that could be useful to me.

[Judy]

I have suffered from the same symptoms for 3 years. I had many tests and saw many specialists but just got worse. I then found a fantastic physiotherapy practice which has helped me considerably. It seems, though amazing, that all my problems are down to bad posture. I have not been back to the doctor since - I know I'm getting better. I don't need to take any drugs and I sleep 8 hours a night and spring out of bed in the morning! Its not quackery - its a perfect science and the most sense I've heard in 3 years. I've got my life back again.

     Please give it a try - I KNOW it will help.

     Take care

[Gabrielle]

Dear Judy, Thanks for sharing the information.  I have been told that my nerve irritation (which is my pelvic and sacral regions) could be caused by bad posture.  The nerves shake and get very irritated but all the pain is gone.  Did you have nerve irritation and is improving your posture helping?  I do have a mild scoliosis and lean to the left and put pressure directly on the area that's irritated.  Do you think improving posture would help the nerve irritation?  Thanks so much.

[Kev]

Look for a book by Pete Egoscue called "Health through Motion" and the role of poor posture...makes sense.

[M. Lemke]

hi
I've had pelvic floor pain for 12 years.  It is still
unbelievable to me.  Not much seems to help.  Biofeedback
and stress reduction help about 1/3 of the time, but it
never completely goes away.  It's like cramping (not menstrual
or intestinal) and moves around all the time.  I've tried
zillions of things from medications, MRIs, acupuncture, etc.
I would love to hear from anyone with anything resembling
this.  My address bill.***@**** (Bill is my husband.)

[kym]

To the Two Lees in Nov. 99

Your symptoms sound so familiar to me.  Originally (10 yrs ago) I was in a car accident that left me with cronic (chronic) head aches and black outs.  One of the milder side effects was a burning itch that radiated down both of my arms.  After many Drs., drugs and pain mgmnt classes, I learned to live with it and eventually the syptoms (symptoms) disapated.  Until recently.  For the past few months, I have had continual headaches, some days better than others, I have a burning, radiating itch that, sometimes affects one arm, than the other, or both.  The pain and itch does not allow me to sleep through the night, (putting pressure on my arms alleviates the symptom for a little while, but does not stop it).  Recently I have had another irritation pop up.  My right eye will go into spasms.  Not just a few times, but minutes at a time.  My neurologist is baffled. MRI revealed minor disc deterioration, internist found nothing out of the ordinary with the blood test except my white count was a little low.  I feel like I'm going nuts!  My neurologist feels it is systemic, yet he referred me to a dermatologist to "treat the syptoms (symptoms)".  He's put me on vioxx,(no alleviation) xanax (in case it was all stress induced)and even offered valium to help me sleep - which I refused. Nothing has helped.  The only thing that I have come up with that helps the burning itch a bit is benedryl and cortisone cream.  It doesn't stop things, but it does help a little.  If you have any info that will point me in the right direction, please let me know!!

[Cheryl]

I HAVE HAD AN ONGOING PROBLEM WHICH IS GETTING WORSE WITH NO DIAGNOSIS.  I HAVE NO PAIN BUT I HAVE SEMI- PARALYZATION TO MY RIGHT SIDE FACE TO FOOT.  THIS NOW IS ALSO STARTING ON LEFT LIMBS ONLY.  I HAVE MOTOR DISFUNCTION  AND EXTREME WEAKNESS TO EXTREMITIES.  ALL THE NEURO TEST I HAVE HAD DONE SHOW NOTHING.  THIS IS STARTING TO CONSUME ME AND I NOW USE A CANE FOR FEAR OF MY LEGS GOING OUT FROM UNDER ME.  I HAVE USED ABUTEROL INHALER FOR SEVERAL YEARS AND I WONDER IF THIS COULD BE DOING IT?  I JUST WANT AN IDEA OF HOW TO PURSUE CONQUERING THIS PROBLEM.

[Sheila]

Ihave had 2 back surgerys for herniated disks. I still have leg pain,cramping, and my muscles twitch. This has been going on over a year. I feel i have nerve damaged but can,t get any relief. What causes my muscles to jump in both legs?