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

[CCF-Neuro-M.D.-SH]

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
   I can tell you are very frustrated with the medical system.  It is unfortunate that you do not have a diagnosis despite your extensive testing.  You are not alone, sometimes it takes time.
   Your symptoms of burning pain with electrical type pain are consistent with a possible small fiber neuropathy.  This would not show up on the testing that you have had thus far, because it involves the small mostly unmyelinated fibers.  To diagnose this possible condition I would recommend a QSART (quantitative sudomotor axon reflex test), an autonomic testing battery with tilt and a skin biopsy (3 small biopsies that are taken from 3 spots ascending up yhour leg to measure for axon loss in the skin).  Small fiber neuropathies are most commonly caused by diabetes, but can also occur with paraneoplastic syndromes, some cancers like multiple myeloma, and as a side effect from some drugs.  I would also recommend that you get a paraneoplastic panel, monoclonal protein workup (serum/urine) and a CT scan of the chest/abdomen/pelvis with contrast (to evaluate for occult malignancy).  Medications that treat neuropathic pain will likely be helpful, but you may need to try several before you find the one that works best for you.  They include elavil, desipiramine, pamelor, neurontin, lyrica, cymbalta, tegretol, etc.
     Muscle spasms all over the body, without weakness, atrophy or spasticity and a normal EMG is most consistent a benign fasiculation syndrome.  This can occur after a viral syndrome, after exercise or in normal people.
    Given the extent of your symptoms and the effect that it has had on your life, I would also recommend that you see a psychiatrist to help you adjust to your syndrome, until answers are more forthcoming.
   I hope this has been helpful.

[makina]

jus wanted to add. I am on lyrica and zanaflex.  this year is the first time i have ever taken any meds.  i just tolerated other tiems.
rhumatologist thought fibromayalgia but the neuromucular doc says it is not.  he said it has sometihing to do with the firing signals in nerves he just dosent know whats cauing it yet.
muscle feel poopcorn poping.
muscle pain.
excruciating of limb pain
strange crreepy crawly all over body
all this is in every part of body
worse is when all of this in every part together.
up and down day by day.
what could this be?
lyme or what
what should be my next step.
neuros dictation says possible deymilnating and neuromuscular specialist dosent say anything

21 yr old sis just diagnosed of ms

[makina]

one more thing to add.  my nuromuscular doc said my muscle biposy normal but i got the copy of it and here is what it says.

a thoorough histologic evaluation does not identify any myopathic abnormality that would explain the patients history of refractory myalgias and cramps.

neurogenic changes are very mild and could be incidental.  the number of activity denervated fibers is very small and would not be expected to manifest clinicaly,(weakness),either subjectively or objectively.  while non-specific mayalgias are a clinical finding in a proportion of patients with active denervation on biopsy, it is more commonly seenin the setting of advanced disease and often with accompanying sensory sysmptoms.  

also he said all blood normal but i says creatine kinase, total serum 21.

[Opeth]

Hi there, you mentioned that you suffer from upper respiratory infections, so I have to ask if you have ever been given any fluoroquinolone antibiotics (such as Cipro, Levaquin, Tequin, Avelox or Floxin) to treat them?

These drugs can cause every single symptom that you listed; new side effects from fluoroquinolones can appear for months after a person has stopped taking them, and persist for years or even be permanent.

If you have taken any of these drugs, at any time, I strongly suggest that you look into this as being the cause of your complaints.  I suffer from much of what you mentioned as a result of Levaquin, which I was given nearly two years ago for bronchitis.

Please take care.

[makina]

Hi

i was given levaquin for bladder infection after my second pregnancy.  i think it was in 2001.  i did get something called a target rash and i stoppe the med after 3 or 4 dose.  so i mean i got the flu shot i 2003 and some stabbing pain started before the flu shot bubt majority of the sysmptoms went hay wire agetr flu shot.  

i have always woundered about meds.  i also recieved one kenalog allergy shot and it was few months after that i got stabbing pain all over body.  who knows
docs dont say aything about this.

lets say it is cause of meds, so what do we do.

[ladybiker]

I find it so amazing that so many of us seem to have the exact symptoms and yet doctors don't seem to have any idea what it is -- it seems to happen all of a sudden.  I too am going through the same thing.  I finally went to a neurologist who put me on Topamax.  It has not helped me at all.  He said next step is MRI and the nerve test.  I don't understand what is going on that causes all this unexplained muscle twitching and spasms.  I do the same thing all over.  The only peace I get is at night when I sleep -- I take an Ambien.  When I wake up and move it starts all over again.  I keep wondering if anyone has ever found out what has caused this, or found any relief.

[Opeth]

Hi, if the cause of your symptoms are from medications, or especially Levaquin, then there is really very little you can do except wait for the damage to heal.  Some supplements are helpful (magnesium and calcium, Omega-3).  Organic diets can also be helpful to some as many farm animals are regularly treated with Baytril (another fluoroquinolone).

I would really suggest doing some research into Levaquin adverse reactions, there are many sites devoted to these drugs and the people who are suffering from them.  I think you'd be surprised to see how similar your complaints are to the other victims.

[Opeth]

Oh, and I almost forgot this piece of advice:  Never take another fluoroquinolone antibiotic again, ever!

[SilkyT]

I read that you were given Lyrica. (Doc, this is for you, too.)  I have just been diagnosed with "substantial central disc herniation at C5-C6, There is also severe foraminal narrowing on the right and moderate foraminal narrowing on the left, totally effacing the thecal sac and ia encroaching on both lateral recesses." This causes nerve pain in my hands and the nurse practitioner (I don't have a doctor) gave me Lyrica prior to the MRI because "I don't know what Im treating."  
Sometimes it works, most times not.  What is the other medication you take with it; maybe that's why mine doesn't work that good because I need something with it or need something stronger.  Doc, can you give any advice on this?  I would like to know if you would recommend something else different or recommend Lyrica.  P.S.  I got the MRI results AFTER the nurse was giving me Lyrica. When I got the MRI back, I was headed out of town and didn't get a chance to have it read. My pinkies are extremely painful and my hands are numb and tingling.  I have constant hand and pinkie pain that cost me my legal secretarial career.

Thanks!  Any advice from anyone would be most appreciated.  

[ladybiker]

The neuro put me on Topomax (topamax) for the muscle twitching.  I don't have migraines.  And that's why I really don't understand it.  I came home and read up on Topomax (topamax) on the internet, and it's for anti-seizures -- such as Epilepsy (not sure if I'm spelling it correctly).  I don't have Epilepsy, nor do I have migraines, though I've always had a problem with sinus headaches. Through all of this I started having heart palpitations and chest pains.  I ended up going to a cardiologist.  My blood pressure has shot up.  These muscle spasms are driving me crazy.  I read this board with everyone having the exact thing I'm going through.  The muscle spasms are continous through the whole body, in the back, neck, legs, arms, no one can really seem them, but they feel like "popping" under the skin from place to place.

I have tried to think of everything I can think of, to what I have eaten, where I have been, what I have taken, the medications, it was like one day never had, and the next day they began, and now driving me crazy.  I am on Lipitor, and I have taken Ambien for a long time.  I have gone back trying to recall every single day for the past 2 months what did I do, what did I eat, if I should start loading up on vitamins, I've tried magnesium, I've tried Vitamin C, I've tried everything I can think of or read about.  the only good thing is reading these forums.

I also am on Altenol (not sure I'm spelling that correctly either) for the blood pressure.  My blood pressure has always been normal.  I see no difference in the muscle twitching from Topomax (topamax).  I'm supposed to follow-up next week with the neuro. Today I've had a headache in the top of my head - which now I wonder if it's the Topomax (topamax) causing that?  It's a vicious circle.

[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.

[ladybiker]

Okay, sorry, one other thing, you might like to read up on Topamax.  They have a website.  Topamax.com.  Interesting reading.  For those that have migraines it could be something great.  I guess it's like the Imitrex?  When I went to my primary care the other day, they had a brochure in the waiting room on it also.  You might want to check into it.

[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'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 (topamax).  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.

[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

[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!

[SunflowerPower]

I've been experiencing similar symptoms to the ones that Makina has and I've also had a normal EMG and MRI.
Thank you for your post! Now I know that I have small fiber neuropathy, and I'm not just going crazy.

I did some research and found this article that says that up to 16% of people with small fiber neuropathy have celiac disease, an allergy to gluten, which is most commonly found in wheat products. Also, many people with Celiac disease do not have the classic gastrointestinal symptoms. You can view the article here...

http://www.celiac.com/st_prod.html?p_prodid=1262&p_catid=101&sid=91hH9H1VM7is5cD-15106221217.d5

Today I learned that my uncle has celiac disease. I'm going to ask my doctor for a blood test. You may want to consider doing the same.

[kmrehak]

Hello there.  After i saw your symptoms, i had to ask you what you have done, if anything at all, to help your pain?  My mother of 47 years old, has been diagnosed with all this pain; however, doctors apon doctors tell her they have no idea what it is, one actually saying it is RSD, another saying it is not.  My question to you is what are you doing about your pain?  She is maxed out on her medicaiton, still really not helping though. Do you know what the diagnosis is even called?  What are you doing as a result of all this?  I really want to be able to help my mother, but it seems like there is nothing i can personally do!

Thanks you SO much for your time and concern!

-Kirsten



no diagnoses yet

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

[OldRocker]

I am A VET and about 3 years ago I awoke in the middle of the night
to extreme pain in my right side of my head.
Since then I have had progressing nerve and pain problems in my right side.
My ankle will swell,My right side will light up will burning pain that drives me crazy.
I have had cat scans,nerve testing I call hotwires,I have been evaluated for every kind of therapy they have to no avail.
I have had nuclear medicine do heart tests,They say my flow of blood is just fine.
The nerve pain is now spreading to other parts including the shoulders ,neck and arms.
I am on perc's,muscle relaxers,high blood pressure medicine,anti-depressants.
The pain pills are almost useless,Muscle pills do hardly anything.
I awake to almost unbearable pain about half the time that takes me forever to get moving and once I do I do not want to stop because the pain returns.
Doing anykind of heavy lifting takes up to 3 days to get past the pain with pills.
I am having a hard time coping.
Any suggestions? I am 50 years old.

[mpcny]

I can't believe I ran across this post as it feels I'm reading about myself. For the past year, I have been having burning pain in both legs and arms, my feet feel like ice all the time, spasms  and twitches all over my body, numbness and tingling in my hands and feet. The muscle around my eyes always feel stiff. Then I started sleeping only three hours per night? Most recently I felt a spasm deep within my ears and now I have Tinnitus. I also feel cold all the time. I have been to numerous doctors, Neuro, ENT, vascular, ortho and no diagnosis yet. I have been given high doses of Baclofen, Neurontin and Lyrica and nothing helps. The pain is unbearable. Most recently I went to a major medical center and am awaiting results.

[Buzzie2]

The pain is unbearable. It has been unbearable for the better part of three years.

My ears hurt. It hurts to sleep on them some nights. They turn bright red, they twitch along with the muscles in my face. My teeth hurt. My head gets stuffed up. My eyes swell up, get sore, are light sensitive, run with tears for no reason. I can hardly move my neck, which gets hot to the touch. I have HORRIBLE tinnitis--in one ear I get musical notes.

Some days it's not too bad, but other days it's terrible.

I have arthritis in one knee. It came and went for a couple of years, with my whole leg getting stiff and sore until finally the damage showed up on the fourth x-ray.

A very long time ago I got bit by a tick. I got a large red rash around the spot where the tick was, but I didn't connect the two until about a year ago.

So, I have Lyme Disease. I found a doctor who would prescribe oral doxycycline, but after six months of treatment which made every symptom worse, I gave up.

I have test results from a specialty lab that indicates Lyme Disease, but it's not what the government--and most doctors-- consider positive.

The latest doctor told me I don't have Lyme because I don't have facial paralysis. I cried in his office. I'm not going back.

I get the feeling others of you have described, like my whole body is vibrating. I go through spells of insomnia, which Ambien helps, but I wake up feeling unrested. My energy level has gotten better since the doxycycline, but I still get stiff and tired when I haven't done that much.

I don't have any muscle weekness or vertigo, but I lose my balance. I have spots on my skin, and my arms and legs are starting to look leathery.

Strong smells make me physically ill. I no longer enjoy music.

I have myelin basic protein antibodies, but my MRIs were normal. My blood work is repeatedly normal, except for low sodium and chloride, which is strange since my blood pressure zooms up when ever I'm stressed--especially at the doctor's office. I also have a positive rheumatoid factor, but not ANA or elevated C protein or sed rate. I've become hyperthyroid.

Mostly it's pain pain pain--Vicoden helps, but I take as little as possible since it's so hard to get a doctor to prescribe it.

If this is something besides Lyme Disease, I would sure like to know what it could be.

Thanks for listening. While I wouldn't wish this misery on anyone, it's good to know you're not alone.

[Annie62]

If I were you I would also put your posting in the Rheumatology forum (if there is one) to see if anyone responds.  You might get a response from someone who has one of the connective tissue diseases or be able to ask a question of the rheumatologist there.  Just a thought.

[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.

[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....

[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.

[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).

[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

[sneakers]

Hi,
I Have AVN of my feet, my left being the worst. I also have it in many other joint as a result to high doses of steroids for Asthma. In 2003 I had a revision of my THR that resulted with a fractured femur then staph infection and I was on IV's for 3 1/2  mths. At home. The antibiotics were Vancomycin and Azactam . At the end of treatment I started having very bad burning in my body which felt like every vein in my body was on fire it was so painful I cried the whole time the drip was running and it lasted for a long time after it was finished. Then I started having itching and crawling all over my body to the point I thought there were bugs on me. I have never felt really good since the surgery and infection, Now my feet have gotten so bad with AVN the Dr. says there is nothing that can be done for my left foot and nothing is being done for any of my other joints just pain management which does make having some kind of life possible as long as I don't do to much as I have fractures in my left foot that makes me really cringe when what feels like the fractures move, Question is. I read the post Opeth 9/13/06 C3. I have taken all of these meds. During recovery for infections urinary bleeding and the list goes on. I now have very bad burning in my feet and hands which also cause cramps and spasms that make my feet curl up as well as my hands.  My pain doc. gave me lyrica and it helps some. Could this be caused from the meds mentioned? I live with enough pain I don't need more is there anything you could tell me that could give an answer to this burning I can't stand anything touching my feet at times sometimes just putting them on the floor makes me just want to cry. It's becoming most of the time. Anything you could tell me would be greatly appreciated. Oh my revision was x's 15 before they could get the old hip out. Any suggestions would be appreciated.

[aussiepat]

Hi,

I'm 40 years old and for the past 3 months have been suffering from twitching (popcorn type) in my calves as well as spasms most muscles after exherting them.  I've still got great strength in my leg muscles and arms but the twitching is causing me great stress (which only seems to exacerbate the twitching).

There may be a number of things that may have started this off but I am thinking that it is either of two things - 1) I had a fever for 4 days back in late November 2006 that I could not work out its origin and 2) in December 2006 I hit the back of my head on my bed when foolishly jumping into it with the lights off.  The top of my neck was injured and swelled up by about half a centimetre for about 2 days.  Straight away, when I did the injury I had big twitches in my neck that would only go away when I tried to relax the neck muscles.  

The early problems I was getting was stiff legs (the backs of the legs) with mostly my right leg being affected.  Strangely enough, the stiffness seemed to get better after sleep.  I was also feeling large stiffness on the inside of the legs and this was more noticeable on the right leg.  My right leg became a bit weak around the knee so I saw my doc and told him how it might have happened.  At the same time, as I'm now 40, I asked if I could get the normal barage of blood tests done to see how healthy I was.  The results came back with high creatine and high creatinine kinase levels.  Both of these concerned my Doc and he sent me for further tests.  As I took anti-inflammatories for the knee, and as the knee seemed to get better, when I did my next blood tests the creatine levels were down but my CK levels had gone even higher.  Since then I have been worried about having ALS as a lot of the symptoms I have got ie. increased CK, fasciculations (sp?) and tremors, seem to point to this.  

I am seeing a neurologist on the 16th of February to get further tests but I'd like to hear whether anyone else has similar problems (I see most of you do with this "popcorn spasm).  I don't think I have Lyme Disease as it seems more atypical of the US.  I'm hoping to get tot he bottom of this as it is quite stressing.

Patrick