Tingling, Twitching, Racing Nervous System, One Year Plus, Still Undiagnosed...Where to Turn?

[monarog]

I've posted once before.  I am a 45 year old female, previously healthy, active runner.  I herniated a disc at C6-7 about 1.5 years ago (no surgery then).  Six months later a slew of symptoms started.  Finally, about 3.5 months ago, it was determined that I had compression on my spinal cord and I had ACDF surgery 9 weeks ago.  I still have most all of my symptoms and wonder if there is more to this than the disc issue.  My neurosurgeon is also not sure my compression would cause the myriad of symptoms I am dealing with, as follows and I've had for about 14 months:

twitching, pretty much body wide
buzzing feelings everywhere
numbness and tingling, arms, legs and also over both cheeks and nose a couple of times
burning tongue, numb tongue, overall irritated tongue
nervous system is hypersensitive, nervousness - startle reflex is over the top
tremors, hands, legs - this seems to be as a result of my racing nervous system as when it's really racing I tremor, when it settles a litte I don't tremor
just started - a light rash on my legs; also, my skin feels itchy a lot
my eyes have felt overly sensitive to light, only a few times, however
when this first hit, had balance, walking trouble, this has improved somewhat
light headed, dizzy
high blood pressure, sudden onset (never had it before, ever) when all this stuff started 14 months ago
hyper reflexes (probably from cord compression?)

All of the above waxes and wanes, but I am never well.  My hypersensitive/nervous feeling is the worst part of it all - this is a constant though sometimes more hyped up than other times.  I have had brain MRI's, spinal tap, EMG/NVC, blood work up for usual ie: thyroid, liver, vitamin/mineral deficiencies, Lyme (rare in WA state), ANA - all normal, no red flags.

I'm not sure my cord compression could really foul me up this bad.  But...something has wreaked havoc with my nervous system.  I don't know where to turn at this point or do I just wait it out more?  I have seen the head neurologist at a major med center, 2 other neurologists, rheumatologist, etc. They pretty much scratch their head and send me on my way.  I'm really tired of feeling bad 24/7.  Any ideas or where to turn next would be appreciated.  Also, I am on no meds other than ibuprofen as needed for my neck pain.  Thanks for input.

[karenkirby]

A related discussion, sertonin was started.

[wakingup2day]

I am a bit relieved but more horrified to find out so many people are suffering as I am. It will be 12 years for me this January. First off do not let the medical community write you off as a head case if you know better and have been suffering for over a few months. My symptoms are primarily on the right side and started due to an unimpressive car accident. I was rear ended while at a stop light. A day or two after the accident I saw a chiropractor who said it would take 8 weeks to straighten me out. I thought "no way". I felt I didn't have time and all I could possibly need was a neck adjustment. I went for a second opinion and was referred to a neurologist. Since it would take two weeks to get an appointment I agreed to see a physiatrist instead. (spine specialist)  He thought the bizarre myriad of symptoms was impossible and did suggest to my husband that I see a psychiatrist. But in the meantime he would have me see a physcial therapist for the  whiplash. I have been seeing one since. I have seen so many doctors it s ridiculous. In 2005 I even spent 3 weeks at Mayo Clinic in Rochester, MN.  I have also been in various therapies almost nonstop. Physical therapy, acupuncture, cranial sacral therapy, chiropractic, vestibular therapy, vision therapy......  The only solid things found for me in the first 6 months were a concussion of the inner ear and stenosis at 4-5 of the cervical spine.  Mayo found a broken rib that hadn't been found earlier. But they could not explain the movement disorder ( involuntary spasms of muscles) that had started 9 months earlier. Find a neuropsychiatrist to be in charge of the drugs you take (MD's in both neurology and psychiatry).  In my experience eastern treatment methods definitely calm the nervous system better. Also find a gentle chiropractor who understands myofacial release. Some physical therapists and massage therapists understand and are good at it as well. Be picky about who works on you. Many cause symptoms instead of relieving them, long term. Also don't give up. After 12 years of constant pain in my shoulder that started spasming 4 years ago I just found out it had been broken .  NOONE EVER NOTICED I HAD BROKEN MY SHOULDER UNTIL 12 YEARS LATER!!! Suffice it to say I have no confidence in doctors.  They truly want to help you but due to insurance company pressure and just lack of understanding the complicated human body they aren't near as capable as they would like to be. Especially when it comes to the brain and nervous system.

[PlateletGal]

Have you guys ruled out MS, lyme disease and/or fibromyalgia ?

[nickname2199]

My symtoms are very, very close to those of Monarog, I experienced them first 4 years ago. It started as 3-4 months of what I descibed as pain in the head (as opposed to a normal headache), then the spasms and buzzing, wired, anxoius feeling, waking up at 3 AM buzzing to watch a muscle palpitate. I usually can sleep with 2-5 mg. of valium. I too did the barage of tests. I saw all the doctors and ultimately wound up at a physical therapist, this went on for near a year (the treatment)she's sure she fixed me, I know she got rid of the muscle spasms. I had 2-3 years completely symtom free. For whatever reason and completely out of the blue I got a twitch in my cheek 2 1/2 months ago, this became a numb face (left ear down across my lower jaw) sore left arm and neck, back pain in and out across my upper back, the anxiuosness, and I stumble over words trying to talk. I have alway been a fast talker with a large vocabulary, and now find myself stuttering and stumbling my words. I saw a chiropractor, and after three adjustments found that this was lighting up my condition as opposed to helping. I am now back at the therapist, who thinks this is in my autonomic nervous system. I am writing to mention this as I see no mention of physical therapy, or chyropractic care in everyones stories. I am no better after 4 visits, patience is all we have. I also see no mention of acupunture, my next options, as I see no conventional medical treatment.
Steve

[callenius5]

I read this and cried! I am a 29 year old female and have been feeling similar symptoms for 15 years.  When I was just starting high school I was diagnosed with MS. For a year and a half  I was treated with all sorts of medicine for MS including giving myself a shot everyday. My senior year we went for a second opinion and they concluded there wasn't enough evidence to prove I had MS.

I have felt these symptoms on and off for several years. I felt crazy (and still do) I made a few attempts at finding answers early on but had horrible experiences with doctors that gave me the impression that I was crazy and it was just stress.

2months ago I finally had the courage to pursue it after a very bad "episode". I have seen neurologists and cardiologist and had all sorts of blood work. NOTHING!!! I feel nuts. Everytime I go to the doctor and they say everything is normal, I get really sad. I feel horrible for feeling that way. I don't want it to be anything, but at the same time, what the heck? I do feel like I am nuts.

After reading these stories I know that I am not alone and that I am not crazy. Other people are experiencing them too.
Its so hard to go on day after day when you just feel miserable. After 15 years of this, I am ready for answers.
I have an appt on Monday. I was dreading it because I can't bear hearing that everything looks fine and maybe its stress. This forum certainly gives me more courage to keep fighting. We need to know what is happening with our bodies!!

[tyning]

Hi everyone.

Im new to this site, i decided to join up and chat as i actually felt better knowing that i wasnt the only one having alll these odd symptoms!
Ive all the same symptoms and over the years have had an mri and seen a neurologist, ive seen countless doctors all who say i have anxiety- well of course i do i dont feel well is what i want to shout!
I dont feel like a very good wife or mum as i feel poorly all the time, i have always been very active, i own 4 horses so i have to keep going.
I am now seeing a new doc who wants to run some more blood tests(lots apparently) so im hopeful that somethimg shows up in them otherwise i shall be pushed to one side feeling like a total fruit cake AGAIN!

Heres hoping we all feel better soon

[mariom1411]

hello i am going though the same exact things that everyone else is, i have sufer for 5 years,i have done gust about everthing plossible,but found that if you get a masage for over and hour it helps for 2 weeks
you start on head all the way down to toes do that 3 times for one week and you feel the differnts.  hope this works for some of you.

[shinakto]

Hi everyone, I am a 25 yr old male, and i am going though the same exact things that everyone else is, mine all started just like inneedofhelp, I was rushed to the ER by wife wife one yr ago because I was literally having intense pain and pressure in my chest and left arm (needless to say that I am around 170 pounds, used to be extremely active and ate like a normal 24 yr, which is nearly all the time lol). The ER doctors could not find one darn thing wrong with me and then said that I had a severe panic attack, since my wife was 3 months along at the time, so I blew it off and returned back to my normal activities. Around a month later, my wife had just left for work when I got up to take a shower, and BAM! The most intense abdoninal and groin pain I've ever had, hit me like a freight train, I was totally immobilized and couldn't really comprehend anything around me for about 5 - 10 minutes. I call her and she took me to the ER, 9 hrs later, the doctors come back, all lab work had been done and they couldn't find anything again, but when I opened my mouth to my wife and said that one of my friends has IBS, both doctors immediatly  said that's what you have, uh huh, we can't believe we overlooked that (right, ok guys). I got some meds from them and started right away, 2 days later, I have extreme nosebleeds and passing out sessions... so I totally got off that stuff and changed my diet. All seemed well until November of last yr, I work as a retail manager and we also had christmas right over us, so I had to work extra hrs... bad thing, since I was helping an employee with some overstock, so I get on a 15 foot ladder, while he was handing the items to me... then it hit me... I had bad double vision, ringing of the ears, and a bad taste in my mouth, so I decided to get down, but ended up passing out and falling. Thank god there was a customer and the employee there or it might have been bad for me, so I was rushed to the ER again and waited several hrs until the doctors called an emergency nuro doc to come see me. He gave me a stroke test, EKG ECG, MRI and a CS, all of which came back totally normal, so he tells me that I have "Near Syncope". I was told to rest and not do anything strainful or stress-related... Retail during christmas, unhappy customers = stess lol. Everything seemed to come back to normal, but as of march of this yr, I have been layed off from my job that I was with for 8 yrs because of the fact that things are so bad now, that I can't feel my left hand (Left side of palm and my little finger/ring finger) I have this really weird sensation in my hands, eyes, legs, feet, and neck, this feeling of my muscles twitching or moving around alot, sharp 1 - 3 second headaches, extreme loss of appetite, sweating in cool places, chilled in warm places, sun doesn't bother me, but it feels like I am going to pass out any second. I also have some bad pain in my left side of my neck/throat and it's almost like my entire lymph sections are swollen, and my immune system has crashed. I have never had a bad injury, always active and happy before this, I graduated from callege when I was 20, but now I can't remember almost my entire childhood, rather easy math problems I can't figure out, just feels like my mind is working at 20%. Doctors now look at me like I'm some ptho lier and that all I want is attention... heck, all I want is my life back, I have a wife and a 5 month old to take care of, and seeing as this is knocking me to the ground, I now always have this feeling like I am going to breathe my last breath... if anyone has had any checkups or improvements, I would loved to hear about them, since the doctors are alittle mudane in my area.

Hoping that all of us gets better... I just feel this illness might not be related to a "normal cause" since there is now over 3 million + post like ours on the net, and they all range at the start of 2001/2002

[Steve1906]

Hello: I'm a 54 year old male...I started getting the shiver/chills through my body about a month ago and stll have them everyday all day!!! have also had chest pains for just about a year now and they can't find anything. They got so bad on Monday night 5/12/08 I went to the ER and they kept me over night and did some more testing; found nothing. I've also had all the blood work, 2 chest xrays 2 stress test and thet can't find anything wrong. My wife and the doctors think I'm nuts! I got a rash on differnt parts of my body around the same time as the shivering started (six weeks ago or so.) How is everyone doing, better I hope! any Ideas? This is driving me crazy...

[inneedofhelp7]

im a 23 yr old female, my symptoms started out as chest pains, i thought i was having a heart attack literally burning sharp pain in my chest and down my left arm. the ekg's showed nothing! the blood tests showed no raised enzymes.. i wore a holter monitor for 48hrs  and nothing.  they said i had generalized anxeity disorder and panic attacks and i started on celexa, trazodone, and lexapro.  celexa in the morn, traz at night to help me sleep i also had insomnia  and lexapro when i felt like iwas having an attack. i kept explaining to the docs that it doesnt go away. there isnt a period where i feel fine.  then my fingers started going numb and my toes. and i was getting buzzy feelings threw out my body.  hot flashes all the time and a burning tingly feeling in different parts of my body. my muscles twitch constantly  the "anxiety medicine" has not helped anything.  my eyes get blurry when i try to stare at far objects and they are hyper sentive to light. if i walk into a room that is slightly cool i start chivering really bad. im the only one out side in the sun wiht a sweater on! ive had diareah and upset stomach so i dont eat as hardly anymore. lossing wieght because of that my muscles feel really heavy and weak when i try to move then i shake. i have had ct scans and they come out fine. xrays fine blood tests fine. i have given up hope. i was even thinking of writing my kids letters incase i died. i feel so bad and my husband thinks its just anxiety and is getting mad at me for my frequent trips to the er!  my ears are also bothering me its like they are achy in side and i have vertigo. sometimes the room seems to be moving. they have also checked my ears for the vertigo and balance problems. SOMEONE HELP ME! i cant even take care of my kiddos right now

[sassy_41240]

I was just reading all the post. i to in september injured my C5-6 disc protrusion and a musle tear in the lumbar 3. I am no better. i have every symptom you all have described. The doctor feel as if it is from the disc protrusion but compensation is fighting me so bad i have not seen a Neuro yet. This was work realted. Not 2 weeks before the injury i was given a clean bill of health from my doctor. i had a total exam with labs and all and they said i was great. then i injured my self and now this is how i feel all the time. i to feel like i am zoning out sometimes so bad that i could pass out. i have all the symptoms you all describe. this is scaring me to death. I went from feeling great to feeling like i cannot go on..

[jane2008]

I have alot of your symptoms. It all started with two numb fingers and a tingling in my thigh which soon went down my leg into my toes. I was sent to a neurologist straight away. My reflexes were nearly absent in my bicep and hyper in my leg. I had recently had shingles on the left side aswell and the neurologist thought it maight be post viral that is affecting the dorsal roots in my spine and should settle. Tingling never went and after four weeks I developed bad pain in my neck and head and down my sciatic nerve. Went back to neurologist who ordered MRI of spine and brain. Brain showed three lesions which were non specific and MS ruled out. Since then tingling has travelled to my right side (leg, arm and also face). BP went up and I couldn't walk for a day and went to hospital. Neurologist said he thought I might have anxiety at this stage. I then got the most terrible searing pain down my left arm and chest at night. My arm was moving by itself. Another neurologist (private) said it was not anxiety ands he was sure I had post viral peripheral neuropathy and sent me back to neurologist expert at hospital. At this stage I felt like my nervous system was out of control and I get feel my whole body buzzing alot of the time. This was worse when I thought about my symptoms even though they were real. I was sleep deprived and neurologist started me on sleeping tablets and nortriptylene. Another nerve was affected before I could see peripheral nerve expert. He examined me and said I had very uncommon (but not unheard of) post viral neuropathy which should settle in a few to six months. He decided not to do a spinal tap because he said he was 9/10 sure of the results. I am on increasing doses of nortripylene (until 50mg). The medication has helped alot. When your nerves are upset the feeling is very much like anxiety. Also who cannot help be anxious when your body is doing all sorts of things it shouldnt be?. I feel like I am going to come right. This has all been over 4 months. Some nerves are improving and some new ones are being affected but medication puts it all in the background for me. Before I was thinking about it 24/7. The last specialist I saw said that neurologists often say it is anxiety because the two systems are so closely related.

[joelski]

I don't think your husband was correct. I am a 25 YO male and over the course of the last 15 months I have had almost all of the symptoms that you have experienced. Doctors have yet to diagnose me with anything, yet they have all been quick to suggest it's stress (which I highly doubt it is).

[cat33]

Have you considered that It could be the surger that caused all your problems.
I have 5 ruptured disks. The pain comes and goes but when I get it is unberrable. I have been to 3 surgeons who refused to operate.They listed what could happen if I went throughj with it even partial paralisis. So I opted for the pain.

[cdvzfr]

I am not sure if this will help. I tried to copy my preveious posts from the MS site.  I am kind of in your world too. They don't know what caused all this to happen to me.  They are sometimes suspicious of MS but then it is rulled out everytime. I hope this might help.

In 2005,  I was having depression and stress of bills, I started a daycare service and my twins and  5 years old, along with the first weird symptom of double vision and MRI's and Neuro appointment. The scary words of it might be MS were said for the first time.  

My doctor gave my Lexapro, it helped my mood swings, depression ( I would get teary eyed when I would just talk about things) the aniexty of my bills.  That is why had to start watching kids. I had my twins, lost my $35,000.00 / year job 3 days after I had them.  The cost of daycare for 2 new borns and a 3 year old was $375.00 / week. I was going to start at the bottom with a huge pay cut. I knew I had to do something so I  decided to stay home and watch kids.  I went through a bacruptcy, a repo. of our family van. I felt like my whole world was crumbling all around me.  I do have family that will help if I ask.   My husband would look at me like I was a ***** and depressed person he didn't want to get near.

Started having double vision and visual disturbances in right eye. Lasted for 2 weeks.  Had blood work for all kinds of diseases and nothing came back postitive.  Then had an MRI done which showed a small lesion on my optic nerve of my left eye.  Saw a nero. and he determined that he thought it may be the start of MS, treated me for stress and aniety with Lexapor. The medicine really helped.

In 2006 life started to get a little easier.    

So, I thought it must just be it was stress.  Thank God!  But, then in March of 2007 I had bladder problems and problems with my left eye.  My left eye froze up and hurt when I moved it, really bad pain in the back of my eye.  Lasted about 1 week. Drove me crazy but I thought it was Allergys or sinus infection.  Didn't call doctor.  Then in July 2007 same thing happened again. ( I thought ok what the hell is going on?) I had a appointment with my nerologist coming up at the end of the month so I will just let him know all this.  My appointment ended up having to be changed to August.  Went had another MRI.  

Since MRI, Sept. 2007 I have had Numbness in my right toe and ache in Right leg. Lasted 3 days then it moved to right pinky and right arm.  Also lasted 3 days.  That all went away except for the shaking in my right hand and burning, achey feeling I get through out my arms and legs.  A little pain and burning in back.  Twiching in eyes and my arms are feel heavy like I just worked out.
I am starting to get fed up with the can't find anything besides the 1 lesion so pretend like we never told you anything and go on with life. But, we need to see you again in December to be sure it's not MS?
OCT 2007 am having really, really bad pain in my left arm. In the middle. I have been having it all morning. Left arm feels weak and every now and then it burns from elbow to my fingers. also some tingleling in fingers. I am alittle scared. What can I take? What should I do if it continues?
I was afraid it was heart problem but, my right arm is sore in the same spot. Not as bad as on the left.

I have been trying to tell my husband that I am concerned and he just keeps saying we are middle aged, suchs to getting old. Take something.

I was sent to the ER by my neuro because my pain in my arm was so strong that (2) 500 mg of Hydrocodone (Loratab) wasn't helping.  I was there for 5 days.  I had typical MS symptoms, burning feeling flowing from my head down my body, tingleing, double vision,  numbness in face and lip, no balance, and even the loss of my left leg for two days.  All blood work and MRI's of the whole body  and LP came back normal.  I was sent home with lots of medicine; Neurontin  (100 mg 3 x day), Naprosyn (500mg 1 x day), Phenergan (25mg 1 ev.6h), Ambien (10 mg ea. night)

Had severe headach from LP that lasted for 5 days. I wasn't sure if it was from LP or something else.  Until I had this really bad echo start on the 5 day along with ringing in my ears and this woshing sound.  I was dizzy and vomiting, felt like I was dieing.  My Husband took me backk to the ER. They did a CAT SCAN which showed my membrains were inflammed and I had extra spinal fluid in brain.  I was treated with100 units of Acthar Gel and 2 bags of Solu-Medrol.  Another Mri of brain was done with contrast (1.5 Tesla) and nothing changed.

I have to still take the Neurontin for the rest of my life. I had to stop my daycare service to try to lighten up stress. Keep taking Lexapro for stress.

I am completely feeling Normal again. Nothing happening to me.  I am not sure if it was the steroids or the Neurontin or if what ever it was went away.

Rae

[Htime]

I am a 45 year old Male with very similar symptoms.  I have a herniated disk at the C-4 area but its believed to not requrie surgery.  If I am active my legs and arms also get tired. I dont have much problem with twitching. So far I have not noticed any rashes. I have trouble sleeping at night. If I dont take a muscle relaxing pill at night I end up waking up between 3 and 5 with total numbness and tingling. I cannot get back to sleep.. I have been to a neurologist and have had most of the same tests as you.. so far no one has any answers for me either.  If you have found any solutions I would appreciate hearing them.

Thanks and good luck!

[monarog]

Hi,
Just an update, all of my symptoms are relatively unchanged.  No worse, no better and depends virtually on the hour you ask me.  Today has been a terrible day, very dizzy, very hyped up nervous feeling in general, the usual pin/needles, balance issues etc.  I'm still amazed that I am so messed up with no answers.  I have been waiting to see if I'll get better or it will just go away; but, so far, status quo.  I have had no relief on my neck pain since my surgery 5 months ago and all of the terrible neurological symptoms remain.  I don't know where to turn next and am sure I'm suffering from depression as well - just as a result from feeling so awful for so long.  I have times in public where I worry that I'm going to just pass out, seizure or something as I feel that out of sorts - but that hasn't happened...yet.  Not sure what to do.  I have a husband and three kids.  To say the least, this has been very difficult.  If anyone has ideas for me I would really appreciated.  Please see my first post as that lists the laundry list of symptoms I am dealing with.  Many thanks.

[nutritious food nation]

Have you had your potassium checked? also, do you currently, or have you every had any warts or other virus' that could be masking problems?  would love to know how your doing.

[PlateletGal]

I would suggest doing some research on fibromyalgia. All of your symptoms sound like they could be due to fibromyalgia. Also, low magnesium can cause muscle twitching --- something else you may want to talk to your physician about.

Good luck !