numbness....help

[Sandy]

I have a problem and am getting no where with it. I was at the ER twice yesterday and they couldnt help me a bit. It started about 3 days ago......... when ever i would put my head down i could feel a streching in the back of my neck and then my legs and feet would tingle like they were going to sleep when i lifted my head it would stop.Then i went to bed and when i woke up the next morning (Sunday) I was numb from the waist down! Not a dead numb but more like my entire lower half was asleep , well here it is Monday and it is still asleep! The only thing i can think of is that i have been having hip pain for a few months now, i dont know if its related or not. but i do know that i am scared to death and no one seems to be able to help me or tell me what it is. I dont know what to do please help!!!!!!!!!

[nanal800]

A related discussion, sharp shooting pains was started.

[Karen]

I have had no weakness, but I have a strong sensations of tingling (shock-like) that travel down my right arm and both legs when I look down.

My MRI shows no signs of an arthritic condition, and a brain scan (with and without dye) is negative. My neurosurgeon said I have Lhermitte's syndrome and said that I should basically "live with it".

I've read up on Lhermitte's and it seems it is caused by three things -- arthritis, MS, and physical trauma. I am an artist, so it would be reasonable to assume that this is from 25 years of hunching over my drawing table. My question is... what do I do about it? Are anti-inflammatories helpful? Can I expect it to worsen? I can't seem to get any answers.

[Mary]

Everyone:  It really makes me wonder if I have GB. I'll tell you about me. I'm a 40 year old woman. 2 kids. In November last year I had my flu shot. (Had 2 past years-No problem).Day after flu shot got into minor car accident. Got whiplash. Was only checked out that day. Started getting pins and needle sensations various parts of body. Then took hormone test FSH blood test 2 months later  because doc said I was perimenopausal. Unexplained bleeding problems. FSH test was 67. Pins and needles sensations contiued. Got my first 2 migraine headaches. I really don't know if pins and needles are worse because I am on estrogen patch (side effect?) or if it is from something else(flu shot from before) or Menopause. These pins and needle sensations are actually worse at nighttime. They wake me up. Seems like its getting worse.  Whatever side that I lay on something wakes me up because my leg, or arm, or hand or even ear feel asleep. When I get up and shake whatever, it goes away.  I feel kinda weak for a while whereever the sensations were. I KNOW it is NOT in my head. Doctor doesn't seem concerned about it.  But I haven't told the doc it's been getting worse. I do have high blood pressure but it is controlled by medicine.  It's been fine for the past 7 years.  If I lay down on by back the sensations are on both hands or arms.  If I lay down on one side, sensations are on that side.Some nights it's stronger than other nights. I have twitching also on my eye or face during the day.  Also if I sit too long (like now on the chair for the computer) I will get a numb leg on the side that I am putting weight on.  Does anyone have any imput to this?  Anyone with similar symptoms?

[Karen]

Christine,

I would look for a neurology and neurosurgery center associated with a teaching hospital. Your local neurologist/neurogsurgeon will likely start with an MRI... and these films can of course be sent along to anyone you might consult in the future. I have no medical training, but it seems logical that your condition might possibly be the result of your accident. Make sure you explain about your accident to your doctor. (My doctor asked me if I had been in any car accidents, etc.)

There are any number of good neurology/neurosurgery centers -- Boston General, Cleveland, Mayo Clinic, Johns Hopkins... to name a few.

You have my sympathy for your frustration... I am frustrated too. Good luck. -Karen

[christine harwood]

you dont understand how scared i am reading all of your letters.
i am 21 years old and i was in an accident ( hit by a car while i was on my bike) a little under a year ago and i have been numb from the waste down with murdersome migrains. no one is helping me. they wont tell me anything but i started reading what you all have wrote. i am not sure why this has happened to anyone they are all hrrible in their own way.
i was never a sickly person i was average like any kid through school. after the accident i ignored the symptoms then one night i laid down on the couch and took a nap three hours later i woke up numb from the waste down and still feel nothing it has been  about 2 weeks and i am seeing doctors but i have nothing definite yet.
i live in arizona so if anyone can direct me to a good neuro doctor here or have any advice please email me:
***@****
or call me at:
480-736-1323
i am home all day on fridays and saturdays and in the evenings after 4 pm.
i will call you back if you are worried about a phone bill.
i am desperate and so far i have nothing but numbness and pain.
please, i am willing to fly anywhere to get help.
if i find anything out from my dr.s i will keep you updated as well so if it might help someone it's there.
i am just scared cause i dont know why it happened out of the blue or if it was from being hit by the car.
plus to let you all know i am not mad at the individual who hit me. i am a forgiving caring person.
i also wish everyone the best of luck with everything you do and who you are. you all sound like very good people.
i hope you will get to know me and think the same.
please if you have any questions feel free to give me a ring or drop me a line in the email.
take care..
christine

[Karen]

As far as a history of trauma... I have had no car accidents ever. I did fall from a horse... about 25 years ago. I did hurt my lower back then, but basically have had no related problems over the past 25 or so years. My neurosurgeon said it was possible my fall could be related to my Lhermitte's.

I actually think the problem is more likely related to the fact that I am an artist, and a near-sighted one at that. So I have a tendency to hunch over my desk and work literally inches from my drawing board. I am trying to work more upright (using easels), so I do not have to keep my head in a bent position. I wonder if working like this for 25 years could cause a problem. And then... what would this imply over time and, again, would anti-inflammatories work? I also wonder if a myelogram (sp?) would be indicated? I don't know. I'm just trying to put together as comprehensive a picture as possible.

I really appreciate your input... thank you. -Karen

[CCF Neuro[P] MD, RPS]

Dear Karen:

Sorry to hear about your problem.  Since you do not have any of the etiology factors that anti-inflammatory medications might help, they will likely not be a help.  You do not have MS, so treating with medications for MS will have no effect.  You do not give a history of trauma.  We do see some patients with anxiety who complain of what is a variation of Lhermitte's.  Although they sometimes complain of shoot pain when their neck is flexed, they also experience it at other times.  When their anxiety calms down, the pain resolves.  But, I can't tell if you have the latter.  I would think that this may be something you'll have to live with.

CCF Neuro MD

[Donna]

55 year old healthy woman.  Several months I've had pain, swelling and redness in toes.  The pain has increased in severity.  Also, I have constant tingling in my hands.  I have been tested for gout, and arthritis -- both negative.  Went to podiatrist yesterday and he is sending me back to original doctor for blood sugar test.  Has anyone had similar pain and numbness in same places, and, if so, what is the diagnosis?

[To Gina from Christine]

Gina,

The last comment was for both of you.  I want you to understand just how difficult it was for me to obtain the diagnosis of Guillain Barre Syndrome.  I'm not saying that ER physicians are not good because they are.  Their field touches upon all arenas of medicine and when they are stymied, they should call in a specialist... not give you the telephone number of one.  My bout with the syndrome occurred in 1972.  Not much was known concerning it... and I remember being quizzed relentlessly by several physicians on the matter.  Each time I joked about them paying me for the information instead of me paying them for the office visit.  The woman with the facial numbness and mild sensory loss in her hands acheived her diagnosis through information fed by me to the physician she worked for.  The one thing that is absolute concerning GBS is that it is definitive in origin.  It comes from flu viruses.  If you had any kind of flu prior to the onset of your symptoms, inform your physician... and since you are aware of GBS, mention it.  Ask if this could be a possibility.  Again, good luck, hang in there and please keep us posted.

Sincerely,

Christine

[CCF Neuro[P] MD, RPS]

thanks for your comments.

CCF Neuro MD

[Christine]

Gail,

I spent a couple of weeks trying to obtain my diagnosis of Guillain Barre.  The first diagnosis was that I had "the viral flu and just couldn't shake it".  The second ER diagnosis (same hospital) said "you have mononucleiosis and iron-poor blood".  Alas, a third diagnosis (same ER) was obtained from an x-ray of my skull.  The female resident told me if I would just tell her how many times someone hit me in my face (going numb) and where contact was made, they could help me.  Stymied, they gave me the telephone number of a neurologist.  The fourth diagnosis was made by the family physician.  "It's that glandular problem again!"  Four days later I collapsed at home, was rushed to his office.  He took one look at my partially paralyzed face and said, "I can't diagnose this." whereupon he phoned one of his colleagues (neurosurgeon) at a different hospital where I was rushed... and then finally, finally, finally, received the true diagnosis.  And the only way to acheive it was via a Lumbar Puncture.  

I would really appreciate an update on your condition.  You mentioned a Spinal, so please... keep us posted as to the outcome.  I for one know that the edge of my chair is where I will be waiting.  Good luck - Christine

[Gina]

Hi Christine,

I  have really wondered about this and your post gets me thinking more.  I had a   bout of the flu probably 3 weeks before this all started, maybe 2 weeks, I forget.  Anyhow the deep leg sensation, I noticed while in bed the whole body felt "comfortably numb" but  once I got moving it was nothing I really noticed.  Getting up to feed the new baby my body was very heavy feeling, every limb equally on both sides.  I though gheesh, I must be exhausted here... then the other things.. the entire face numbness  poof... then tingle on inside of arm, then sometimes on top of both arms, lower back ache for 3 weeks, not exrutiating but its there!  I had a VEP and sensory test yesterday, the gal would not say a word about it.  another stressor to wait for an entire week.  See this is what blows me away and im trying to read all the posts on this to get an understanding but, if I Had MS IN THE SPINE, how can this account for the numb face and neg mri?  MS is not relapsing here.. no breaks.. im steady and times worse... not any better.  I dont fit peripheral neurpathy, its not really my hands and  feet, sometimes bottom of right foot and top of right foot feel odd, muscle twitches all over my body.  Yet im not weak yet, can still function.

I think this week when I go to my neuro to follow up, he wont have a clue.  He will order a spinal which I wish he did off the bat, I think that clues in on Guilliane barr?  I know with Chronic demylating disorder its usually equal on both sides, anyhow thats what I read.  This is highly unusual, I dont know and its frustrating when nobody can help or wants to.  I have been taking Benedryl and I think I feel soemwhat less of the numbness.  Maybe its controling some inflamation?

To anyone who reads this, just a background on me, I am a "normal" mentally healthy woman with 2 children and a fantastic husband who has also been suffering from the stress of what im dealing with.  I am not a nutcase or whacko, I come from a "normal" healthy family.  This hit me out of the blue, I did not want nor need this darn problem.  I've been stressed to the max in the past and functioned normally, therefore I dont think stress.  Anyways, if you read this and have the similair symptoms your not alone.  And the Dr on here is one of the most knowledgeable people I have ever known on any of these neuro topics and  one of the few who I thing "cares" about others who are not doing well.  I pray for us all on here that our problems subside!  I'll keep you updated on my  test results.  Happy HOlidays to all!

[Christine]

Dear Doc RPS:

Mine began with my spine feeling like a rubber band that just kept getting wound tighter and tighter.  I could no longer lower my chin to my chest as if looking down my body.  Then the muscle weakness stepped into the picture followed by the out-of-proportion sensory loss afterwhich the left side of my face began to tingle.  The tingling subsequently triggered the first sensory loss eventually resulting in paralysis.  Tingling began migrating up the nerves in my lower extremities thus resulting in sensory loss followed by parasthesias (the creeping thing).

As you know, my GBS case was extremely involved, but over the past 29 years, I have witnessed this illness striking patients in different severities.  One woman in particular, had facial numbness and mild sensory loss in only her fingers and hands.  Another was an RN taking care of me who kept saying, "Lord!  I'm thankful mine didn't progress like this!"  So, it does strike and progress in different severities.

I am not a physician, merely one who has been there.  I tried to ignore all my symptoms and continue working, etc.  Sometimes I wonder if displaying that kind of behavior has any bearing on how involved the illness becomes?  A 12 year old boy said nothing and kept trying to play baseball and climb trees.  He had the worst case I'd ever seen.  The RN told me she laid her backside down immediately and suffered minimally.  Others who did the same also suffered minimally.  Sometimes I wonder?  But no matter... I always become extremely concerned when any of these symptoms are described because it is over-looked in ER's everywhere.  I figure that it's better to be safe than sorry.

Sincerely,

Christine

[Gina]

Hi Gail,

I can relate to some of what your saying.  I've got facial numbness, and  my tingle is spreading, its only been a few months and Im not feeling any better.  I read up on Guilliane barr and typically i've heard you deteriorate fast.  I know I dont have that, Ms has been ruled out pretty much.  My neuro cannot answer whats going on.  From my understanding some peripheral conditions usually do not target the face, Dr RPS, does this sound right?

Gail I have hopes I have some odd virus that will terminate itself as quickly as it came on.  I have no other heatlh issues, all tests normal.  I  can feel your frustrations, I went to the ER and they sent me home for anxiety,   if so why has it not gone away?  Im anxious because I feel numb, not the other.  please  keep us updated, im concerned for you!  I am miffed as how the body can be fine then poof, down hill  within a few months.

[CCF Neuro[P] MD, RPS]

Dear Christine:

The classic signs of GBS are back pain, usually lower back, and subsequent muscle weakness that is out of proportion to sensory loss.  GBS usually follows a viral illness or bout of diarrhea.  As Gail does not note any muscle weakness, I am not sure that GBS is the diagnosis here.  

Gail if you are reading this, usually parasthesias run down the nerve.  There can be sensations that feel as if they are migrating up a nerve, but this is usually when the extremities are really involved.  I would suggest that you see a neurologist as there could be a sensory neuropathy of some kind going on.

Sincerely,

CCF Neuro MD

[Christine]

Doc RPS:

I don't mean to pry here, but Gail just mentioned that sometimes she has chills and sometimes she feels like she is burning up.  When she puts her head down she feels a stretching in the back of her neck all the way down.  The problem hasn't been going on but for a couple of weeks.  She mentioned that the ER people couldn't help her a bit.  The symptoms that she is describing are classic signs of Guillain Barre Syndrome.  She didn't mention the chills and burning up in her first post.  I am very concerned for this woman and am pleading with her to return to the ER and mention three letters to the doctors who are stymied... GBS.  Hear me Gail?  GBS.  It's very important that you go... and if it's not GBS (and I pray it isn't) at least it can be ruled-out.- Christine

[Gail]

fOR SEVERAL WEEKS, I HAVE BEEN HAVING BURNING,TINGLING AND NUMBNESS IN MY FEET MOVING UP MY LEGS AT TIMES AND IN MY HANDS MOVING UP MY ARMS TO ELBOW. SOMESTIMES IN MY FACE AND HEAD AND BURNING ACROSS MY BACK, SOMESTIMES I HAVE CHILLS AND SOMESTIMES I FEEL MY I'M BURNING UP

[David Hawley ............. Hawleycorp@cs]

I feel your pain ... half of the my left arm has gone to sleep (sort of) ... I mean strait up the middle; pinky and the finger next to it ... strait up the middle of the hand and all the way up the back of my arm.  I've got tingling in my hips and legs and feet ... I do have a something unromantically called a Buffalos Hump on my back ... basically the upper part of my back or the back base of my neck is under great pressure from a build up of fat (yes fat) ... as far as I know i'm screwed >>>

I expect to wake up dead one day from this bain.

{and no it's not like a hunchback}

[CCF Neuro[P] MD, RPS]

Dear Sandy:

It is difficult to tell you what is going on, without an exam and over the internet.  Usually, it is not a neurological process that causes symmetric parasthesias (numbness) in the lower extremities from the waist down.  It is too difficult for a cervical problem to be so equal.  I would make an appointment with a neurologist and get it checked out.  Likely, you may need a referral so you will need to contact your family physician.  It is best just to get things looked at and a thorough neurological exam performed for a baseline.  I don't think there is a worrisome problem occurring, but just to check things out a neurological exam would be beneficial.  

Sincerely,

CCF Neuro MD