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

[kizzy33]

I was having spasms in my stomach  off and on and thought it was scar tissue as i had gallbladder surgery while pregnant with full incision.  Last year Macrh  I had muscle spasms in my  right leg for two weeks went to the doctor he told me my hip was out of place 1 cm popped it back and i was fine up until  September 06 .All summer I had a routine of walking 25 miles a week but that was soon to end .I woke up one morning with such bad spasms i thought they were charlie horses in my legs but i couldnt walk them off they lasted a week then they were gone again for a few weeks .Then in novemebr they returned to  the point i couldnt walk across the room after waiting a week to see my  General  practice  he  stated i need to see a neurologist asap ordered a bunch of blood test , lyme, lead,  arsenic  magnesium , calcium  all of which he said could cause spasms but he also ordered a brain mri so that i would have that all done by the time i got to the neurologist( Which by the way my neurologist said saved him alot of waiting time ) so I am thankful to my primary care doc for that.  Well after  three more test a normal mri of brain , spinal cord, came a quick  diagnosis of stiff person syndrome.  Positive test  for anti gad antibodies very high.Emg test showed  whatever it is they look for  to confirm possible Stiff person syndrome. I have read that this normally goes undiagnosed for a long time  because it is so rare if your doctor has never seen anyone with it  they think  its a mental thing when all test come back normal they think nothing is wrong.Its only this anti-gad antibody test that can prove you have it ( as far as I know I am not a doctor). So  all of you  having spasms read the internet regarding stiff person syndrome  see if it fits your symptoms and ask for this blood test for stiff persons . It  mimics MS and often gets missed for a long time . I am thankful I am 34 and have just been diagnoised  I am mother of 4 year old whom I can no longer keep up with  becasue of my leg spasms unless  I take diazpem  three times a day and it controls my spasms for  now. Unfortunatetly there is no cure and  it does spread to all the muscles eventually  but there is no way to predict it in each person. They can treat the symptoms and  thats what I am sure we all hope to try  to achieve as symptom free life as possible. god bless all  I am still very scared for the journey that lies ahead of me as they have no idea how quickly my stiff persons will progress.If anyone else in this forum has had it i would love to hear from you . Thanks
Kizzy33

[Audeng]

I have late stage Lyme disease.  I was diagnosed two years ago with a western blot test.  I take a regimen of antibiotics to keep the disease at bay.

I had many of the same symptoms listed in this forum. I have the feeling that the room is vibrating, nerve pain, stiff joints, sensitivity to light, memory loss, spasms and twitches all over my body, numbness and tingling in my hands and feet.

I went two and a half years until they finally diagnosed me with Lyme.  I had so much nerve pain and twitching that I was in a wheelchair for several months. The disease progressed untreated until it reached stage three.  I ended up in the hospital unable to move my legs with severe nerve pain (like my legs were being cut off) and severe cognitive problems.

I had 7 MRIs, a spinal tap and a muscle biopsy among other tests trying to figure out what was wrong with me.  Several doctors treated me like I was crazy.  One doctor suggested a mental evaluation (I think they needed one)!

Most doctors do not understand Lyme disease. They are just finding out how widespread this disease is. Doctors do not want to treat Lyme disease because of the problems getting a positive diagnosis. Some doctors that treat the disease have lost their licenses because their treatment is so radical (long term antibiotic treatment).

[Annie62]

I am sorry you *also* have had your symptoms dismissed by doctors.  You might want to read up on Lyme disease as it can cause some, if not all, of your symptoms-just a suggestion.  If I were you I would post on the other forum (the patient-to-patient one) and see what others think.  There are a lot of people on this forum who have found out they have Lyme after having symptoms similar to your own.  Sometimes the test that doctors do doesn't always show the infection, but there are better/more accurate tests that can be done to reach the dx.  In the interim, if I were you, I would try to get a question in to the CCF neuro doc to see what he thinks (sometimes it takes a while/months) if you haven't already tried. and also continue to pursue a dx with your own doctors--or go to different ones if they still aren't taking you seriously.  Keep a concrete, concise and accurate log of all your symptoms and take it with you to all your doctors' visits and let them read it; also a list of any questions you have (especially good idea if you are like me and have a hard time talking to doctors; it's hard to talk to people when you know they are being dismissive).  Be assertive and try your best to make them do their job and don't give up on pursuing a dx if your symptoms continue on.  Good luck to you.

[extremelyfrustrated]

ok so like everyone else i too have been experiencing similar symptoms only to be rebuffed and dismissed by my doctors who think i am making a mountain out of a molehill and as evidenced by my name it is extremely frustrating to have no one believe you....this began about 6 months ago when i woke up one morning and noticed that both my knees and my lower back were very stiff....i originally just thought it was the way i slept or maybe a virus or something but then i got somewhat sick....very lethargic and what not....a couple days later the stiffness in the lower back went away but the stiffness in the knees did not and is still with me currently....i also suffer from twitches all over my body in addition to sporadic pain in my hands and feet....numbness in my hands and arms if i am in the same position too long though it never happened before in those same positions....often get headaches and seem to have developed a sensitivity to bright light....see floaters and bright spots as well ad blurred vision occassionally....have been to 3 physicians all of whom dismissed all my symptoms, a neurologist who ordered over 30 blood tests and said they all were normal plus an emg of my arms and legs which came back showing some type of inflammation at which time he said to consult a rheumatologist....rheumatologist was unhelpful and basically said there is not much i can do for you....and have seen an opthamalogist three times about the floaters bright spots and sensitivity to which he says he sees no problems in my eyes....no one seems to see the progression and everyone shrugs it off and it is so angering and i am so alone and i just am constantly worried....

[JulesKpt]

It has been a while since your post LadyBiker. I do hope you are better. If not the Topamax my also be causing your muscle spasms.

I had a bad experience with Topamax. I took it for seizures. I had the tingling feeling in hands, feet, knees, arms, abdomen, and face. It got to the point where it was actually painful and it gradually got worse, but the tingling was not bad compared to the muscle spasms or twitches. Just under my eye, I had a muscle twitch for 2 months. During that time, I also had muscle twitches on my face, all over my cheeks, jaws and around my mouth. It would even paralyze my mouth for hours. I was on Topamax for 5 months. The muscle spasms and twitches gradually became worse and more often. The were in my abdomen and legs. All of the twitches that I had were visible.

Towards the end of my time on Topamax, whenever I would lay down my eyes would twitch and the back of my head would tingle. I went to my neurologist 3 times about these problems. He told me he had never heard of this and he did not think it was the Topamax. He did try 2 different muscle relaxers and they did not work. I did research and the symptoms I had were identical to Secondary Drug-Induced Dystonia. In the prescribing info for Topamax,  Dystonia was listed as a rare side effect. I finally convinced my neurologist that my problems were coming from the Topamax and he tapered me off and changed my medicine. As I took less Topamax my symptoms decreased and about 1 1/2 weeks after being completely off of it all symtoms were gone.

This was not a pleasant experience and I have recently found several websites like this where other people on Topamax have had muscle twitches especially in the face.
I felt better that I had not been alone.

[JulesKpt]

It has been a while since your post. I do hope you are better. If not the Topamax my also be causing your muscle spasms.

I had a bad experience with Topamax. I took it for seizures. I had the tingling feeling in hands, feet, knees, arms, abdomen, and face. It got to the point where it was actually painful and it gradually got worse, but the tingling was not bad compared to the muscle spasms or twitches. Just under my eye, I had a muscle twitch for 2 months. During that time, I also had muscle twitches on my face, all over my cheeks, jaws and around my mouth. It would even paralyze my mouth for hours. I was on Topamax for 5 months. The muscle spasms and twitches gradually became worse and more often. The were in my abdomen and legs. All of the twitches that I had were visible.

Towards the end of my time on Topamax, whenever I would lay down my eyes would twitch and the back of my head would tingle. I went to my neurologist 3 times about these problems. He told me he had never heard of this and he did not think it was the Topamax. He did try 2 different muscle relaxers and they did not work. I did research and the symptoms I had were identical to Secondary Drug-Induced Dystonia. In the prescribing info for Topamax,  Dystonia was listed as a rare side effect. I finally convinced my neurologist that my problems were coming from the Topamax and he tapered me off and changed my medicine. As I took less Topamax my symptoms decreased and about 1 1/2 weeks after being completely off of it all symtoms were gone.

This was not a pleasant experience and I have recently found several websites like this where other people on Topamax have had muscle twitches especially in the face.
I felt better that I had not been alone.