Constant facial numbness

I am a healthy 42 woman, with two kids under 5.  Prior to symptoms, I was walking 3-5 miles 4 times a week.
Last March I began having numbness & decrease sensation.  It began with R hand.  On third day my entire R side was numb, plus head & face.  
PCP asked about cold/flu recently.  I had a bad cold the week before with a weird pressure between my ears.  PCP suspected a reaction to the virus.  He orders blood work(CBC THS lupus RA Lyme-(neg)). Strep test(pos).
Next day, entire body numb & decrease sensation, but no weakness/clumsiness.  Also extreme body fatigue, heart palipations & shortness of breath.  PCP sends me to neurologist who orders brain & cerv MRI w/contrast(neg). Also, visual & audio invoke potential(neg). By this time, numbness is abating. A month into this neuro. does nerve conduction study(neg). He clears me of anything neuro. Says it is not MS.  Next 4 weeks, I have migrating numbness & pain(muscles & joint), skin sensations(burn, crawly, elec shock), slurring words, light headiness, fatigue. PCP sends me to Johns Hopkins.
Now it's May & symptoms occur for several days, then nothing, then symptoms again.  New neuro. suspects small fiber neuropathy(post-viral. Orders same blood work(neg)& skin biopsy to test small fibers(neg).  He's stumped & wants to see me in Jan. Offers to send me to Rheum. to test for CFS/FMS.  I opt to wait.
Symptoms now: frequent facial numbness, constant tight/pain hamstrings, intermittent migrating numbness, muscle/joint pain, electric shock (mainly legs), AM body stiffness.
Could be MS? What type of doc should I see next?

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

Should be somewhat reassuring that the extensive testing has been normal so far including brain MRI, neurological exam, evoked potentials, and lab testing. This makes MS less likely (though not impossible), but a spinal tap could be considered if the diagnosis is still in question.  Although I'm not sure if another TYPE of doctor would be of additional help, at this point you could consider another neurological opinion, go to the rheum apptmt, or follow up closely with your neurologist for subsequent exams. Good luck.

[tactical]

I have suffered with these symptoms since Jan. 2000. Though the inital thoughts were a TIA, 2 Neurologists diagnosed BAM, migraine with stroke symptom aura. Most of the time, I have no headache but do have numbness, tingling sensations, vision problems, slurred speach, etc. If you e-mail me, I will reply with some website links that may help to educate you. I say educate because that is what I did and questioned my Neurolist as to is this a possibility. If this does happen to be your problem, you will be in a small precentage of people that suffer with migraine. Best wishes and good health!
***@****

[LynnSB]

Just a thought: have you possibly been exposed to any chemicals, even household pesticides lately?

[DinaLou]

Not that I know of.  I had been to Las Vegas the week before my symptoms started. 2nd neurologist wanted to know if I had been in the desert.  I had played golf twice on courses located in the desert.  He didn't pursue this any further.

[LynnSB]

>>I had played golf twice on courses located in the desert.<<

this was RIGHT BEFORE symptoms started? It may be a very long shot, but I sure would see if you played golf on a course that had just been treated by pesticides. And I'd do some research on the internet to see if you can find examples of people coming down with similar symptoms after exposure to pesticides and lawn chemicals. I remember several years ago there were some lawsuits about this -- some lawn care companies  were sued by people who thought they had neurological problems from exposure. Again, this is just a wild guess --- and I emphasis GUESS -- on my part but it might be a clue.. if you can find out if you were exposed to any neuro-toxic substance on that trip .

[cyn123]

hi you said nothing of lymes test and also i have and had almost same feeling as you and i was dx with having fifths disease which is viral and usually causes no harm but i swear i have had  a lot of problmems since i contacted it.  You can be tested for it.  Good luck to you i know your fustration in finding out what is wrong.

[shoep]

I have been having similar symptoms... for one year, I had tingling and slight numbness around my right eye and cheek and the tip of my right ear.  Then in Sept. of 2002 I started having tingling down my right jaw.  It was thought that I had a pinched nerve, but 5 months of physical therapy and chiropractic did nothing to the pain.  I have also been experiencing headaches 3-5 times a week, radiating from the occipital region of my head and around my face... the tingling gets worse during these headaches.  I had multiple x-rays and MRI of brain and Cspine which only showed slight degeneration btw C5-6.

I saw a neurologist and he thought that i was having migranes (migraines) and the tingling was complications from the migranes (migraines)... this i am not too convinced of.  he put me on a anti-seizure medicine for prophylactic migrane (migraine) medicine and it made the symptoms worse.

then 3 weeks ago, I started to have tingling on the left side of my face and around my lips... i went to the ER and they did a CT scan which showed nothing.

The tingling proceeded down my Left arm to my pinky finger and then 2 days later to my buttocks and left leg.  I stopped the medicine and it helped, but a week later the tingling has returned at times, it's not constant, but it has turned into more of a numbness/tingling instead.  My shoulder especially feels a decreased sensation along with my jaw bilaterally and right eye.  does anyone have any answers?  I am very frustrated spending all of this medicine and having things get worse.  I had another MRI with Contrast done on thursday and am awaiting the results.  any help or suggestions are welcome!
thanks

[mothermayi]

i couldn't post my question but similiar to some of yours.  I have had numbness from my top lip down to below my chin for almost 2 months.  Don't know why.  Workout thought it could be a pinched nerve but have rested and still have it.  Any suggestions?

[Annika]

Hi,

Just a note in terms of testing for for numbness.  The nerve conduction study usually done to test for polyneuropathies has some limitations, the main one being the fact that this study only tests the speed of conduction of peripheral nerves (the nerves that leave the spinal cord).  It can't measure all the nerves of the body, and it's not very good at finding signs of damage to sensory nerves within the spinal cord itself.

Another study that has some limited use is the somatosensory evoked potential study.  This study sends an electrical stimulus from your skin all the way up to your brain, where it's picked up with an EEG-like measuring system (sticky electrodes on your scalp).  In this sense, the study is able to look at how fast the message travels through sensory nerves all the way up through your spinal cord and into the brain.  This study is often used to track patients with MS, who often have damage to sensory nerves within the central nervous system (spinal cord and brain).  It's also used for patients with spinal cord injuries.  If there is damage in those areas, a regular nerve conduction study might not see it, but the somatosensory evoked potential could.  

The big emphasis, however, is on "could."  The neurologists I have spoken with who perform this test all emphasize that it's not very sensitive - so one has to be very careful not to overinterpret a negative result.  It's one more tool that may be able to help pinpoint the problem, but it has limitations.  It becomes more accurate the more severe the nerve damage is.  If a patient's numbness is very mild, or especially if it comes and goes (as sometimes happens when nerves are temporarily compressed or inflamed), the somatosensory evoked potential study may show nothing.  

This test may not even be appropriate for all patients, but it's one more option to know about if one is struggling with a difficult work-up to diagnose numbness.  

Good luck,
Annika

[shoep]

my MRI with contrast is negative... i sm following up with my PCP tomorrow and am requesting all of the lab tests that i have read about such as B12 and thyroid tests... any other suggestions?  I am moving to the DC area soon, any recommendations on a neurologist in that area?
sarah

[mothermayi]

I talked with my children's doctor about the numbness and he referred me to an E,N&T doctor.  Sounds viral to him, so maybe this could help someone in this group.  Also, check into Valley Fever-usually found in people who visited or live in a desert climate-wind, dust.  There are other symptoms of Valley Fever-being tired is one that I know of.  Good luck.

[rula]

I have been experiencing facial tingling and numbness for the past couple of weeks.It seems to move around my mouth and chin area and comes and goes. It is not affecting my speech and I don't have any other symptoms. I was diagnosed 2 years ago with Chronic Allergic Rhinitis and have completely lost my sense of smell (that's a real bummer I'll tell you.) I wonder if this could be related.  I am a 45 year old woman with children 17 and 20. For the most part I consider myself to be very healthy but these weird new sensations are scaring me. Should I see my doctor? Or just hope they go away. Any advice please?

[Korie]

I am joining this for the first time....I went in looking under Acephalgic Migraine.  I was floored to read that there are people out there just like me.....
I am 32 years old and have been dealing with this for 2 years.  My first episode was a week after I turned 30.  I was told I had a TIA when brought into the hospital.  I could not feel my right hand, my cooridination was off.  I could not bring first finger to tip of my nose.  I kept missing the nose.  It was almost 8 mos later before I would experience the pure hell of this.  I had not had an episode in almost 8 mos, then one day in March of 2001 I could not feel my entire right side of my body.  I popped aspirin just in case it was a stroke and went to see my neurologist.  I could again do nothing coordianted I moved in slow motion, my speech was off and my face had drooped slightly.  He admitted me.  I had 31 viles of blood drawn right then and there with every test you could imagine.  One week later no answer everything kept coming back normal.  I was told "has to be Aura", I was in and out of hospitals for 3 1/2 months going thru the testing and taking medication hell.  I was even on Cummidin.  I was afraid of CNS Vasculitis and MS.  I had a brain angiogram that has ruled out the vasculitis (althought that is not entirely 100% positive)I had the spinal tap to rule out MS.  It has now been a little over a year.  I still have severe body jerking when I sleep, to the point I feel like I will throw my self out of my own bed.  I still get the creepy crawly in my skull, I am numb around forehead down around eyes ears and jaw and throat,  I too stutter when I am going thru an episode.  There are times however, I feel like I am in a daze.  I have on more than few occasions felt like I was locked in the position I sat and could feel my brain tighten up and then realease and I am extremely exhausted after this.  I mean to the point I could fall asleep right where I am...Does this all sound like Aura of Migraine...Better yet Acephalgic Migraine??????  I have NO Headaches whatsover.  I have been on 500mg of Depakote for the past year and half and I have been on 240mg of Verapimil right along side of the depakote. (although I do not have high blood pressure.)  I am due for a follow up with my nuerologist in Jan and I have been having severe hair loss.. To the point my children notice how much in the tub.  My mother who is a hair dresser, my hair dresser forever.  Has even noticed at how thin my hair has become.  I get worried that the Depakote may be doing something harmful to my body.  I have had blood tests recently they come back normal..Again, Frustrating as hell.  I kept a medical journal during the awful period.  So I feel lucky that I am leading somewhat a normal life right now.  The depakote has kept me somewhat "normal" if that is what you want to call it.  When I start having breakthrus where I go numb and this starts all over, the doctor ups my depakote to 750mg a day till the period subsides then I will go back down to 500mg/day.  After all of this should I still seek another opinion, do I live my life like this forever, does this ever get better? Is this the correct diagnosis? Is there really medical help for this?

[cskip]

I am a 33 yr old male with the exact same things only on the left side (majority of the time).  I try to keep a journal of all I eat, drink etc.  nothing really clicks.  All test are negative, I have been on depakote, and still have the attacks but they just don't last as long and vertego is not as bad.  Really frustrated.  Doctors can't find anything so it must be stress.  i am trying to go to either mayo or the clevland clinic, just not sure as to which one to see.  hate to spend all that money to say nothing is wrong.

[pinsnneddles]

I am a 60 year old physically active male who just started experiencing the tingling of the face, especially on the right side.  It has since led to numbness  around the jaw and lip area.  The tingling occasionally occurs in different parts of the torso and limbs.  A full blood workup and an MRI of the head and neck showed no signs of any problems that the PCP could pinpoint.  An initial visit with a neurologist proved fruitless.  Where do you go from here--take drugs that make you feel worse with their side effects or live with the problem???  It seems like there are a few of us out there with similar issues.  Any help is appreciated.

Lar

[sunshinelisa]

Hi.  I am a 24 year old female with two small children.  Six weeks ago, I woke up numb on my right side.  My left side of my head started hurting severely.  I began vomitting too.  I have had several episode similar since then.  But now I begin to lose my ability to speak or comprehend.  Last time I couldn't recall half the details and didn't even recognize my own mother.  All the tests I have had are negative: catscan,x-rays,ekg.  I am very scared that I am having TIA's.  I go to a neurologist on Jan. 17.  I am very scared and too paranoid to sleep because they happen in the middle of the night.  One doc said it was stress and that I was having a panic attack.  Another doc said it wasn't and I don't think it was.  Anyone who wants to e-mail and swap stories, please do.  I am desperately seeking someone with similar symptoms to chat with.  My e-mail address is ***@**** please help!  I would appreciate it.  Thanks!  Lisa

[Ron3]

HI Mother and Corie,

Has anyone mentioned Bell's Palsy?
Some of the others might have tick borne infections like Lyme.
Somethimes the patient has to twist the doc's arm to get
treatment.. There is often denial for some reason.

Here is a report or two that will explain..

Take care... Ron                ***@****
---------------------------------------------------------------
BELL'S PALSY

                           Report #7229; 9/22/97

You wake up one morning and find that on one side of your face, you can't smile, you can't close your eyelid and you can't raise your forehead. Sudden paralysis of the muscles on one side of
your face is called Bell's palsy.

Your doctor should order tests for causes of nerve damage, such as vitamin B12 to rule out pernicious anemia, hemoglobin A1C for diabetes, antibodies for Lyme disease (1) or syphilis and
even an MRI to rule out a tumor pressing on the nerve. Most doctors treat Bell's palsy with prednisone, even though no studies show that it is effective. A recent report in the Annals of Internal Medicine shows that more than 80% of the cases of Bell's palsy are caused by one group of viruses called herpes simplex (2). If you are not treated immediately, you have a 20% chance of having one side of your face paralyzed forever. On the other hand, if you take acyclovir, or one of the other drugs used to treat herpes simplex, as soon as possible, you will reduce your chances for permanent damage. All people who develop paralysis of the muscles on one side of their faces should start to take drugs to kill herpes virus immediately and get tests to find the cause.

1) SP Cook, KK Macartney, CD Rose, PG Hunt, SC Eppes, JS Reilly. Lyme disease and seventh nerve paralysis in children. American Journal of Otolaryngology 18: 5(SEP-OCT 1997):320-323.
    
2) S Murakami, M Mizobuchi, Y Nakashiro, T Doi, N Hato, N Yanagihara. Bell palsy and herpes simplex virus: Identification of viral DNA in endoneurial fluid and muscle. Annals of Internal Medicine 124: 1 Part 1 (JAN 1 1996):27-30.



             Health Reports from The Dr. Gabe Mirkin Show and DrMirkin.com

Transcripts of segments of The Dr. Gabe Mirkin Show are provided as a service to listeners at no charge. Dr. Mirkin's opinions and the references cited are for information only, and are not
intended to diagnose or prescribe. For your specific diagnosis and treatment, consult your doctor or health care provider.

----------------------------------------------------------------

MY BELL'S PALSY

                           Report #6992; 1/3/97

Three months ago, I developed Bell's palsy.

I lost control of the muscles on the right side of my face. I could not close my right eye, smile with the right side of my face or pronounce the letters F and P because I could not close my mouth. I had horrible pain in my right eye and neck beneath the ear. I had to talk and eat by using my fingers to close the right side of my mouth. My eye hurt because I could not close my eyelid. My blood tests showed that I had herpes zoster, also known as shingles which is chicken pox for the second-time. All the neurologists I consulted told me to take large doses of cortisones. I didn't. because I know that most cases of Bell's palsy are caused by infections/ with herpes simplex virus (1,2,3),/ the chicken pox virus that causes shingles (4,5),/ Lyme disease spirochete,/ and a lesser number are caused by trauma, tumors, diabetes and pernicious anemia. The only drugs
that have been shown to be effective in preventing permanent paralysis in Bell's palsy are those that kill herpes (6.7). I am one of the few Bell's palsy patient who did not take prednisone. I took only valicyclovir to kill the virus. I know that cortisones do not prevent nerve damage from shingles (7,8) and can weaken your immunity (9) and allow the virus to cause more nerve damage. I searched the medical literature and found only uncontrolled studies that show that cortisone helps prevent permanent nerve damge (10). My nerve is now returning to normal. I am regaining taste in my mouth and am able to move my eyelid and mouth on the damaged side of my face.

I'm Dr. Gabe Mirkin on Fitness.

1) Ann Intern Med Jan, 1996.
2) RESULTS: Herpes simplex virus type 1 genomes were detected in 11 of 14 patients (79%) with Bell palsy but not in patients with the Ramsay-Hunt syndrome or in other controls.
Comment in: Ann Intern Med 1996 Jan 1; 124 (1 Pt 1): 63-5.
3) Murakami S, Mizobuchi M, Nakashiro Y, Doi T, Hato N, Yanagihara N. Bell palsy and herpes simplex virus: identification of viral DNA in endoneurial fluid and muscle. Ehime
University School of Medicine, Japan. Ann Intern Med 1996 Jan 1; 124 (1 Pt 1): 27-30.
4) Ann Otol Rhinol Laryngol May, 1996.
5) J Infect Jan, 1995.
6) RJ Whitley, H Weiss, JW Gnann, S Tyring, GJ Mertz, PG Pappas, CJ Schleupner, F Hayden, J Wolf, SJ Soong, C Laughlin, J Gnann, L Sherrill, P Pappas, S Greenberg, J Peacock, J Tilles, F Flowers, K Beutner. Acyclovir with and without prednisone for the
treatment of herpes zoster - A randomized, placebo-controlled trial. Annals of Internal Medicine 125: 5 (SEP 1 1996): 376-383.
7) NEJM March 31, 1994; 339(13): 896-900.
8) MH Elleuch, N Hdiji, S Baklouti, H Kallel, S Sellami. Flaccid paralysis of the shoulder due to herpes zoster. Semaine Des Hopitaux 72: 23-24 (SEP 12 1996): 735-737.
9) LM Gustafson, D Proud, JO Hendley, FG Hayden, JM Gwaltney. Oral prednisone therapy in experimental rhinovirus infections. Journal of Allergy and Clinical Immunology 97: 4 (APR 1996): 1009-1014. 10) Watanabe S, Kenmochi M, Kinoshita H, Kato I. Effects of administration of high dose hydrocortisone on Bell's palsy. Department of Otolaryngology, St. Marianna University School of Medicine, Kawasaki, Japan. Acta Otolaryngol Suppl (Stockh) 1996; 522(): 108-10  large-dose administration of Solu-cortef was 96.2% in the 24th week.



Health Reports from The Dr. Gabe Mirkin Show and DrMirkin.com

Transcripts of segments of The Dr. Gabe Mirkin Show are provided as a service to listeners at no charge. Dr. Mirkin's opinions and the references cited are for information only, and are not
intended to diagnose or prescribe. For your specific diagnosis and treatment, consult your doctor
                              or health care provider.

[Jeannek]

I came across this web site when i was researching phenabarbital.  I have had epilepsy since age 15, and i am currently 38.  I am taking the phen.. and the dilantin.  A few years ago, i had these same symptoms.  Tingling and numbness of the right side.  I went to the dr and he said that i had bells palsey, (not sure if i spelled that right.)  He said its from an inner ear infection.  Today i have more severe shaking of my right hand only, is a constant shake...i had a cat scan and mri, all came back clear...im wondering if the medications i have been taking for years could have caused this damage.  I believe that many of the drugs we are given to control seizure disorders are actually causing severe problems.  I have been on many over the years.  Thank you, Jeanne

I would like to see something done about this before its too late.  I dont believe enough research is being done to help us...

[pieo]

A related discussion, facial numbness/tingling was started.

[tunetopper]

A related discussion, pain/numbness coming from the side of my nose was started.