undiagnosed muscle twitching, severe nerve pain, spasms

[makina]

28yrold(grew up with upper respitory infections and allergies)
no diagnoses yet
problem started 1998 when moved to connecticut from texas(8yrs ago)
1998 first pregnancy (first wosening of sysmptoms after delivry)
worsened in 2003 after flu shot
Various test over yrs all normal
mri of brain W/out contrats (last jan 2006)
mric-spine, thoracic, lumbar.
emg(legs normal, arm carpel tunnel)(last 2006)
eeg(in 1999, normal)
muscle biopsy 2006 normal
blood test all kinds(stiff mans syndrome,ana,lyme,etc normal excpet for sed rate(40) and c-reactive(mild) protien elavated over years.
muscle strgthn tone bulk doc says normal.
sysmptoms
muscle twitching all over body(limbs,face,toungue,toes,stomach,etc)
muscle spasms all over body
nerve pain (fire like burning in legs and arms, especialy toes and fingers, umbness, pins and needles)
nerve pain (stabbing, shooting, jabs elctric tearing like pain)comes and goes quickly and can be in multiple places  at same time.
severe tightness and spssms in throat, nerve stabing pain (first sysmptom ever in 1998)
sleeping jerks and awake leg and arm slight jerks
tremors all over although u cant see
muscle vibrations (even in ear lobes)
when odd sensation in neck come i feel fogy and off balance
eyes aquint shut from sudden tightness in face and neck.
the pain in legs and arms is very intense adn hard to describe.  it has the nerve pain but in entire leg and arm as if from top it goes tearing down
into the fingers and toes.  like electic like odd painfull pain in lims. I have hard time describing this pain but its in legs arms

[burningpains]

You have almost the exact same symptoms that I have.  Awful aren't they-- I have twitching everywhere 24/7, electric shocks, burning pains, creepy parasthesias, muscle and bone pain.  I am being treated for Lyme.  My LLMD thinks I may have had this for over a decade but it has been lying dormant until this year.  I am surprised the neurologist didn't even mention Lyme.  I did not have a rash, nor do I remember a tick bite.  I never would have dreamed of Lyme if I hadn't researched.  Please get yourself to a LLMD ASAP!  The supportive people at healingwell.com will help you.  Good luck!

[teenarat]

I am 35 and have an undiagnosed condition for almost 22 years now. I have extream pain in my body all the time and muscle spasms that lock up my body and I cant move for hours or days at a time. I shake and jerk all the time and have lost use of my left lower leg and foot for days at a time.  I love life and want to live it but I feel under a constant cloud. I have seen hundreds of md's and had every test  each md can think of and they all come to the same conclusion that if they can't see it on a test it is not there, but here I am still sick and still having the problems.  My spine burns and I get shooting pains in my neck and spinal cord. When my children try to hug me it is horrible painful loud noises just hurt my whole body.  as I was reading your posts It was great to find people experiencing the same things I am.  I am hoping you might have some suggestions for me to try  thanks

[ladybiker]

I'm supposed to go back to my neurologist on Monday.  I have printed everything off about Lyme, and am going to show to him.   I also am allergic to almost every antibiotic so that concerns me.  I am also allergic to Ceftin.  I am able to take Cipro, but don't if that is one for Lyme.  I remember one time seeing something on me, and knocked it off -- I did not think about it at the time possibly being a tick.  I never developed a rash, but now I wonder.

I have had this twitching all over for probably a month or two. Routine blood work is fine.  Then I started having what I thought was chest pains.  Blood pressure started running higher. I've written on these forums and have had everything you all have had.  First visit with neurologist and he put me on Topomax.  That has not helped the twitching in the muscles at all.  I believe Topamax is used to treat migranes now and seizures.  The stress is unbelieveable from the twitching.  I am also seeing a cardiologist, who is going to do more tests end of next week.  I worry that whatever is causing the twitching could effect the heart and other organs.

I read these boards every day, and hope to read something that shows there is an end to this.    

[ladybiker]

Does anyone have the feeling of being uncomfortable in the chest?  Do you feel like your heart quivers or muscles near the heart?  I have had an EKG which is fine.  In about a week I will have an ultrasound, but this bothers me all the time, along with the muscle twitching.

[makina]

well i have had this problem for 8 yrs. can lyme go undetected for so long.  plus i am allergic to so many antibiotics that i dont know what they would give me.  i going to see a new neurologists too.  plus i dont remember any tick bits but wiithin 3 months of moving to ct my problems started in 1998.

i cant believe so many of us are suffering like this in this day and age.

[ladybiker]

I should add that my EKGs have been fine.  I do have more tests next week with the heart doctor. I think it's just my nerves from the muscle twitching, at least I hope so.  But sometimes I also wonder if it's the muscle twitching affecting the heart?

If anyone ever finds out what helps this muscle twitching, I sure hope they post to the board, and many of us would sure be very grateful.